A Mother's heartbreak

For RSD Awareness month I asked a woman from my support group if I could write about her and her daughter's story. This woman has a 20 year old daughter with RSD. I asked her a bunch of questions but during the process she had to stop. It is one thing to live each day fighting this battle but the memories brought up a heartache she thought she had a better control over. Reliving the past few years made her physically ill. With respect and understanding we agreed to not continue with the questions.

Before RSD her daughter was a happy sixteen year old who loved figure skating and ice dancing. She worked hard and would be at the rink by 5am. She also taught beginner skaters twice a week. She was home schooled and part of an Ice Theater group. She was a healthy and energetic teenager.

They are not sure at what point she developed RSD. Her mother knew she needed her gall bladder removed. Before she was able to convince the doctors about the gall bladder her daughter seemingly injured her tailbone while skating. By the time they saw their third gi/colon rectal doctor the pain would not go away. The pain management doctor then decided to remove the tailbone and two weeks later her gall bladder was removed in an emergency surgery. Her tailbone would not heal. She went in for 5 more surgeries and was in the hospital/rehab facilities for another 5 months. When she finally came home from rehab she was walking unaided and was going to continue with outpatient therapy. Unfortunately when her mother checked her wound it had come open again. She had to take her daughter back to the surgeon for another surgery with a 6 week recovery. During this time her daughter became weaker and weaker. At this time they tried nerve blocks without success.

This is when the mother had to stop telling her story. Remembering everything her daughter went through, what she went through as a mother was more than she could bear. I get it. It took me years before I was able to tell people about what it was like for me living with RSD. Living with physical pain also brings emotional pain. You might not be facing a life or death situation but you are dealing with the loss of a life you did have and dreamed of having. I know the physical pain of RSD but as a mother I can only imagine the emotional pain of seeing your child's dreams slip away. This mother once watched her daughter with awe while she was ice skating and now it is a painful memory.

For RSD Awareness Month I ask that everyone remember that the caregivers also live with the pain of RSD. For the sake of the people who live with RSD and the people who love them, please help us bring more awareness. Help us increase our chances of a pain free life!