Nicole Spink has been living with a chronic neurological syndrome, reflex sympathetic dystrophy, since she was ten. Over the past eight years, the disease, which began as a sprain to her inner left ankle, has spread. She continues to fight for relief each day.
Following the injury, Nicole’s pediatrician placed her in a mobile boot cast. When two months passed with no changes in Nicole’s symptoms, her doctor referred her to a podiatrist. The podiatrist had her icing the ankle four times a day while undergoing cortisone injections. This only made the condition worse.
This was just one instance of the barriers Nicole faced trying to obtain care and validation. Due to her young age, many specialists told her she was making up the extent of the pain. Some doctors even accused Nicole of not being willing to work at getting better. Her parents were angry at such accusations and sought out other specialists. One pediatric pain specialist tried various medications, a nerve block and an epidural, none of which worked.
Nicole entered a different pediatric inpatient pain clinic to receive a continual nerve block, various medications, psychotherapy, physical and occupational therapy and school. She was angry at being confined and refused to attend physical therapy. She would not let anyone touch her foot.
When one of the doctors called her an incorrigible girl, incapable of helping herself get better, her parents pulled her from the program. The RSD was now in both her legs and she found herself confined to a wheelchair.
It was time to make a change. Nicole went to Texas to visit another specialist who invented a non-invasive electrical stimulation device called the sympathetic therapy system (STS). She was told she would see improvements within two weeks. Although she felt hopeful for the first time, six weeks later she left… feeling worse.
By this point, Nicole had been in pain two years and was severely depressed. She found herself fighting those trying to help her. For the next few years, she followed the same pattern: visiting Texas only to return to see if a doctor near home could help. She tried the spinal cord stimulator trial, visited naturopaths and worked with an acupuncturist. Her depression evolved into suicidal ideation. Yet she knew she wanted to live. She also intuitively felt the treatment in Texas would one day work for her… and it did.
When Nicole developed a yearlong whooping-like cough her doctor in Texas felt she might not be getting enough oxygen. The cough dissipated almost immediately after one protocol. This was the sign she needed to keep going. While Nicole still hadn’t received relief for the RSD, she now knew this treatment worked.
Unfortunately, this was not the end of Nicole’s troubles. Her RSD spread to her intestines, causing her excruciating stomach pains. Unable to eat, her weight drastically declined. Soon Nicole weighed sixty-two pounds, and her heart beat erratically. Her doctor eventually placed Nicole back in the hospital with a feeding tube and forced feeding. In six weeks she gained twenty pounds and was discharged.
Yet she still had anxiety about food and lost the weight again. After her second bout in the hospital, she went back to Texas to work with the only doctor whom she felt might be able to help her. The STS treatment eased her stomach pain, allowing her to eat and gain necessary weight.
It was at this time Nicole became proactive in her recovery. For too long, she fought treatments due to feeling judged and misunderstood. Realizing this only hurt her chances of walking again, she began to take positive steps to move her foot. She did not want to be in a wheelchair forever.
Nicole let her doctor in Texas place her left leg in a walking boot. A few weeks later, she started using a walker to take two steps. The pain was horrific, but she knew she had to keep moving.
With time, Nicole was able to take a few more steps. She began pool therapy. The pool was where Nicole learned to place weight on her leg and take steps. It was because of weekly pool therapy that two years later she could walk down a hallway with her walker and boot. In time, she no longer needed the boot. This was progress.
Most days are still extremely painful for her, but she tries to stay optimistic. Nicole continues to run treatment every day. While she still has RSD, the therapy, now referred to as VECTTOR, takes the edge off her pain. When she combines it with diet, exercise and acupuncture, she gains even greater relief. Some days she doesn’t even need to use a walker or wheelchair. She feels she is healing and wants to move forward.
After obtaining her GED she began taking classes at the local community college. She wants to become a physical therapist so she can help others. It is her mission to create more awareness about invisible diseases.
For too many years, Nicole allowed RSD to control her. She is not going to let pain stop her from living life any longer. The greatest lesson she has learned through suffering was that she had to save herself and find happiness, joy and meaning in life.
Pain led her to become the person she is today. “I may not have had a normal childhood, but I believe I was given this life because I can handle it. I grew up very fast. I found that I needed to become proactive to save myself. It took time, but I learned how to speak up for myself while still treating others with respect.
“I accept that I may have pain forever. My hope is to manage it better. I just want to find life enjoyable, and not something I have to get through because of suffering. I want to live. I want to dream. I want to be happy. Isn’t that what we all want?”