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
