She uprooted her family to move where cannabis is legal; now, she’s an advocate
When Enedina Stanger Ramos’s life veered down an unexpected path, she, her husband Mike, and their two daughters refused to allow the challenges and pain define their daily lives. Her deep faith, strong will, and healthy lifestyle keep her grounded and moving in a body that is quickly deteriorating. Finding relief in medical cannabis has made her a staunch advocate of this medicine, and she is making it her mission to share her story in hopes of helping others.
Enedina and Michael met when she was in high school. They fell in love, wed, and quickly started a family. Their first daughter was born in 2011 followed a year later by their second little girl.
Unexplained symptoms finally lead to diagnosis
Following the birth of their second daughter, Enedina began having serious health issues. She developed dysautonomia, Raynaud’s phenomenon, and bradycardia that caused fainting spells. She saw doctor after doctor for an answer. “Most discounted my complaints,” she says. “I was told I was dealing with everything from postpartum, stress, or even early-onset Parkinson’s disease.”
This went on for six months, until she visited one remarkable neurologist who noticed “swan neck” deformity in her fingers. In August 2013, at the age of 24, Enedina was finally diagnosed with Ehlers-Danlos Syndrome (EDS).
Because of the severity of Enedina’s EDS, every bone in her body is hypermobile. “Each minute of my life is a struggle against my pain,” she says. She was forced to use a wheelchair for nearly four years because of the constant subluxation, dislocations, and pain. “I don’t think I even know how to describe the pain level anymore. I only can think of comparing it to labor: grueling, electrifying, paralyzing, intense… it never ceases.”
Her suffering has only increased since she began to experience life out of the wheelchair again. It is only through the strength of Christ (and the thought of her daughters) that she survives each day. “Instead of running from my pain, I view it as my partner,” explains Enedina.
“My body is miraculously functioning because my muscles have taken over for the damaged and lost tendons,” says Enedina. “I know every day could be my last one, so each moment I have the ability to move must be embraced and enjoyed.”
Besides the physical component of living with a rare form of EDS, Enedina has faced significant obstacles finding specialists. She and her husband have traveled from Baltimore to Seattle in an attempt to find doctors who understand her particular form of the disease—with little luck.
Another hurdle is her inability to break down and process medication. She tried everything her doctors prescribed, yet her body either rejects or releases pharmaceutical medicines how it sees fit—making her incredibly sick. She would be forced to the emergency room in order to be knocked out so she could have some respite and sleep. With nothing to offer and no hope within the medical community, her doctors informed Enedina that hospice care was next.
Sheer desperation leads to a decision
Stunned, angry, and disappointed, Enedina was left battling the pain and destructive disease without the help of doctors. Thankfully, she had Michael by her side. Out of sheer desperation to help his wife find relief, and after much research, he suggested trying cannabis. They learned it was effective, fast acting, and had fewer side effects.
Enedina first tried it following a horrific evening where her body spasms (which she describes as feeling like a non-stop Taser to her back) were worse than usual. In the depths of despair, Michael encouraged her to smoke cannabis a friend provided. Within seconds, Enedina’s body relaxed and her spasms decreased.
“The effect was immediate,” she shares. “For the first time in years, my nerve pain was managed. I had finally found relief; this was the miracle we had been praying for. Cannabis was a perfect little plant placed on this Earth to help ease suffering.”
But the family lived in a state where medical cannabis was illegal. Her doctors knew and were receptive to her using cannabis to treat her pain; however, accessing it was problematic. And the ramifications of continuing to use illegally became more and more real.
Uprooting family to become legal
Fearful of losing their daughters if Enedina was caught using cannabis illegally, she and Michael uprooted their family (leaving their support system and friends behind) to move to a legal state. “No one should have to do what we did in order to physically survive,” says Enedina. “People deserve this option of medicine in every state. They shouldn’t be forced to get it off the streets, from a friend, or suffer needlessly.”
By relocating, Enedina was able to start treating a multitude of symptoms. “Most people don’t recognize that our bodies have an endocannabinoid system that produces cannabinoids,” she explains. “We have only begun to scratch the surface with the medical benefits of cannabis.” She uses it as a digestive aid (to help with nausea), to repair soft-tissue damage, for pain management, to treat the neurodegenerative factors of EDS, and as a muscle relaxant.
The various delivery methods she uses include smoking, vaping, tinctures, oils, edibles, and salves. She recognizes there is a stigma surrounding it, which bothers her. “Just as we don’t judge diabetics for using needles, we shouldn’t judge the delivery methods of medical cannabis patients.” Through trial and error, Enedina has found a daily dosage regimen that works for her. But like prescription medicine, she has to adjust her dose depending on her health.
Finding a balance of treatments
Exercise and diet are just as critical as cannabis to Enedina’s wellness. While attending an EDS conference, she heard a speaker discuss how exercise should be viewed as the fourth meal of the day. This struck a chord.
“Too often, we act like sheep. We listen to doctors who tell us not to move because of injuring our bodies further,” she expresses. “But I think that is hurting our bodies more. We need to keep moving and eating clean. We need to be our own advocate and say, ‘I think there is a better way for me to stay strong. I am going to move and run with my kids.’ Movement is vital for every disability.”
Enedina recognizes there is a fine line between pushing one’s body to strengthen it and causing more damage. Each person must find what exercise is best for them, while understanding slight muscle pain (from strengthening) is normal. She encourages others to set long-term goals with baby steps to celebrate along the way. “We are already working against our bodies, so every day we decide to move more effectively is a win,” Enedina states.
She had to start at the beginning—working on posture (vital to keeping her body aligned) and re-teaching herself to walk again through physical therapy, proper nutrition, and pushing past every extreme. Today, she jokes that she trains more hours and harder than her husband, who is an American Ninja Warrior!
Enedina also follows a very strict, clean diet. She eats meat sparingly and only local, in-season produce. “I follow the patterns of nature,” she explains. “All the primary nutrients you need are found in the fruits and vegetables of that season.” Her family (including her young daughters, who also have been diagnosed with EDS) avoid processed foods and sugars. “I just believe we are so sick as a nation that we don’t really know how we should feel. Everything affects the body—including the food we put in it. Food should be fuel and medicine; it should be real and nourishing.”
Cannabis is part of a natural treatment plan
For Enedina, using cannabis as medicine is just going back to the basics: finding a natural synergy with nature. She is blunt: “The veracity of herbs as medicine has never been disputed; the argument is in naming the right herbs that can be called ‘medical.’”
Enedina is not afraid to talk about her use of medical cannabis. “The United States is still in the ‘cannabis closet,’” she explains. “We need to talk more about why it works.” Initially starting the conversation with family and friends, she is now a local cannabis educator as well as a national advocate. “We shouldn’t be afraid of speaking to our doctors about treatment we need. If something will help, don’t take no for an answer.”
Today, Enedina’s goal isn’t to live a life free of pain, but to live a life with happiness, grace, and strength despite her pain. It is a daily, conscious, minute-to-minute decision to choose to either be encompassed by pain or utilize that pain to help others. Enedina chooses the latter.
Passionate, determined, and brave, Enedia Stanger Ramos has gone from wheelchair to warrior. At 29, it is her faith (holding onto something larger than herself and knowing there is a greater purpose to her pain), her family (who give her a reason to live), and helping others that keeps her going. It is having a network of love and support as well as finding positivity and holding onto it that gives her strength.
“To have peace in life is the ultimate goal, but to have peace in pain is the ultimate self-mastery.”
Zebra Network: thezebranetwork.org
Ellen and Stuart Smith – Medical Marijuana advocates: ellenandstuartsmith.squarespace.com