My name is Nicole Hettenhausen. I am 23 years old, and I am from Illinois. I am reaching out in the hopes of helping to make my sister’s dream come true. My older sister, Ashley, is 26 years old, and she has lived with a chronic pain disease known as Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS) since she was 12 years old.
RSD is a chronic disease that is caused by any sort of trauma to bodily tissue. This rare disease causes the nerves in your body to misfire, sending constant pain signals to the brain. It has been described numerous times as feeling as if your body is on fire 24/7. The disease usually starts in one area, most commonly a limb, and ultimately spreads throughout the body to other limbs and vital organs. According to the McGill Pain Index, RSD is significantly more painful than fractures, amputations, non-terminal cancer, and childbirth. What is terrifying about this disease is that suicide rates are high for people who suffer from it.
When Ashley was 12, she was attending a tennis summer camp, and one day she sprained her ankle; that was all it took for the disease to appear. It started out in her ankle and eventually spread throughout the leg and foot, to the other leg and foot, to both of her arms, to her face, and, most recently, to her eyes. Since then she has also acquired other diseases in addition to RSD including: Rheumatoid Arthritis, Trigeminal Neuralgia, Mitral Valve Prolapse, Postural Orthostatic Tachycardia Syndrome, and Raynaud’s Syndrome.
Since Ashley was diagnosed with RSD, she desperately wanted to be a nurse so she could help relieve other people’s pain. She struggled with the pain throughout high school and had to drop out when she was one class short of getting her Associate’s degree before attending Goldfarb School of Nursing. Her pain escalated to the point that she could hardly put any weight on her feet. She had to give up her job and her dream of being a nurse because she couldn’t stand for long periods of time. Ashley was put on disability and lives at home with my parents and me.
Because Ashley could no longer go out except for doctor’s appointments, her only friends outside of our family have become people she has met on Facebook groups for people who suffer from the same disease. They have been a much-needed blessing for Ashley and my family. We continuously worry about her depression since she does not leave the house except for appointments.
As a family, we do as much as we can to help distract Ashley from her constant, burning pain, but there is only so much we can do. There are many times when we feel helpless. What has immensely helped Ashley through the pain over the years has been Taylor Swift. She inspires Ashley to keep fighting through the pain. My sister has gone to every one of her concerts held in St. Louis, and her dream is to meet her idol and receive a hug from her. She wishes to tell Taylor her story and how much her music means to her. My parents, Ashley, and I have even taken to social media platforms to try to get her attention. We have made crazy videos telling Ashley’s story and her wish, and while many people like, comment, and retweet, we have had no success in reaching her. We created #HelpAshleyMeetTaylor and use it on every video and post we make, but it seems to be of no avail.
I realize this is a very long shot, but all I want is for my sister’s dream to come true. I love her so much, and I don’t know what I would do without her. She is the strongest, kindest person I know and still manages to smile through the pain. She has such a generous, caring heart and always puts others before herself. I am so proud to have her as my sister, and I know that having the chance to meet Taylor in person would give her a lifetime of happiness.
@taylorswift @taylornation @ashleyhlovestay @tree-paine
