Ellen Smith is living with Ehlers-Danlos Syndrome (EDS), a progressive degenerative connective tissue disorder characterized by joint hypermobility, skin extensibility, and tissue fragility. Ellen’s case is severe, and has worsened in the past year. Her pain significantly increases throughout the day, and on bad days her mind becomes foggy.
Ellen is proactive in her therapy program. She follows an exercise regime on her bed to strengthen core muscles, and uses pool therapy to jog. Having a rare form of celiac sprue, a chronic digestive tract disease that interferes with the digestion and absorption of nutrients from food, she follows a strict diet that prohibits dairy, soy and gluten. Ellen has found some relief with medical marijuana. In addition, opioid therapy has been used, with the common side effect of opioid-induced constipation (OIC).
Ellen was embarrassed to talk about OIC in the beginning, but the problem became so severe that she had to speak up and seek help. She did not find much help with the medical team – instead, she found the solutions on her own. She believes that at times, the doctors themselves are embarrassed. “That needs to improve,” says Ellen, “because it is a serious issue when you get constipated and it last for a long time!”
Ellen now lives with gastroparesis – and OIC is a big issue for her. She learned when she first tried opioids that they made her intestines shut down. From her research, this is what she found:
1. She turned to colonics – where they insert a tube into the rectum and run warm water into the intestines. She found it was tremendously effective.
2. She used the laxative Miralax daily for years. Now, with physical therapy, she does not need it.
3. She now meets weekly with a manual physical therapist who actually works on the abdomen – moving it around and releasing the tight fascia. She is presently successfully going again.
4. Ellen believes you really do have to drink a lot of water to keeps things going – she drinks at least two large glasses in the morning and in the afternoon, usually a lot more.
Ellen has had to stop teaching, swimming, and coaching. She can no longer paint the house or help her husband with small home improvement projects, a pastime she enjoyed. To the outside world it appears that EDS robbed Ellen of her life, and yet Ellen would disagree. She recognizes that her life has shifted course, but she refuses to become emotionally paralyzed. She and her husband, Stu, live by the motto that you must enjoy what you have while you have it. She has passion for life and continues to live with hope and love.
Ellen works with the various organizations advocating for proper care and rights for pain patients. Serving on numerous boards, she educates the public on pain conditions and the benefits of medicinal marijuana. She hosts an annual pain awareness event each September and testifies often to make sure the patient-voice is heard.
While working with organizations gives Ellen a sense of purpose and meaning in her suffering, she finds the greatest fulfillment in simply connecting with other EDS patients. Ellen understands the speculation and criticism they experience, and spends time encouraging them to hold on to hope and be courageous. In essence, Ellen is still a compassionate educator. She teaches people to become proactive and to be their own best advocate. She urges others to find their own best answers, believing that if something cannot hurt us, it is worth trying to fix us.
With the support of her four sons, the devotion of her service dog, Maggie, and the unconditional love of her husband, Ellen moves forward. She lives each moment as it comes and is happy to be alive.
“I don’t want to be remembered as someone who pitied herself; I want to be remembered as person who tried, a person who made a difference, lived life, and found joy.”