I have had the pleasure and challenge of providing skilled home health care for someone with RSD for the past three years. For those of you who may be unaware of what RSD is, as I was, it is Reflex Sympathetic Dystrophy. It is in short a chronic, debilitating pain disorder for which there is no cure. After learning of what RSD was, then came the question, how do I treat it?
Healthcare for an RSD-er is complicated because they have unique challenges that impede care by traditional means. Routine things such as taking blood pressure, drawing labs by venipuncture, traditional massage and therapy can all be detrimental to someone with RSD. Another challenge is that the general mindset of the healthcare community is to be curative. If there is a problem our aim is to fix it. There needs to be a shift in focus to maintaining or sustaining quality of life if we are unable to improve it. Patients with terminal conditions receive palliative care, but people with chronic conditions don’t always have that option.
One important aspect of providing care for someone with RSD is to be patient and listen. Some members of the healthcare community have a reputation for being bullies. We can rush in, look at a chart instead of the person in front of us, half listen to what they say and offer generic textbook treatment all in about fifteen minutes. What I have learned is that listening to a patient and digging deeper into a patient’s story by asking questions will generally lead to a solution or option for better care. There needs to be a willingness to step outside of the box of traditional treatment and consider new ideas.
I am fortunate that the one person that I have cared for with RSD is Mary Jane Gonzales. She is an advocate in the RSD community and an advocate for her own care. Her desire to educate and spread awareness of this disease is commendable and admirable. I have become a better nurse because I am her nurse.
by Inger Daniels