HOW AND WHEN
DID YOU GET RSD?
On May 10, 2011, I had Ulnar Nerve Entrapment surgery
and I developed RSD about a week after the surgery.
IN WHAT WAYS
HAS IT AFFECTED YOUR LIFE?
I was unable to use my hand to lift items or to cut my
own food, and the pain was terrible. I wasn’t diagnosed until two
months later and I felt my doctor and physical therapist should have
listened to me. I was made to believe the pain couldn’t be that
bad and I wasn’t working hard enough in physical therapy. It was
hard to allow my family members to cut up my food, shop for my
groceries and help me get dressed. I developed severe depression for
over a year.
DO YOU HAVE
A GOOD SUPPORT SYSTEM?
I do have a wonderful, loving support system. My
husband has been so great and supportive. My son and
daughter-in-love asked me to stay with them while I had various
treatments for pain. Their love and assistance helped me accept my
disease and grow stronger.
DOES FAITH
PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I definitely grew closer to God and He showed me how to
help others. Facebook groups have been a great source of information
and support. When I read other RSDers' posts, I realize my disease
is milder and God has given me great compassion for others who
struggle. I understand the verse, “give thanks in all
circumstances; for this is God's will for you in Christ Jesus.”
1Thessalonians 5:18. I now look for the rainbows after the storms.
HOW HAVE YOU REINVENTED
YOURSELF?
I am more patient with myself now. I give myself
permission to nap and rest. I learned new ways to do things with one
hand. I don’t feel guilty when I have to decline invitations or
shopping trips. My health and abilities are limited, so I’ve
learned to put my health first and then I can save my energy. I have
other health problems in addition to RSD, so I’ve learned to
prioritize.
HAS ANYTHING
GOOD COME FROM THIS TRIAL?
My family has grown closer together. I learned my
doctors were not in charge and had put my health at risk. I had to
fire them and select new doctors. I deserve good medical treatment
and respect. I have learned to research my medical treatments and
work with my new doctors as a partner. I have also developed some
close, wonderful relationships with several RSDers and I thank God
for this.
WHAT THINGS
DO YOU MISS THE MOST?
I miss my energy, as well as, freedom from pain and
limitations with my hand. I am independent and now I must rely on my
support system for many things.
WHAT DO YOU WANT THE
GENERAL PUBLIC TO
KNOW ABOUT
YOU AND/OR YOUR DISEASE?
This disease is real and, when doctors and physical
therapists ignore your symptoms, it adds to the pain. There are many
doctors, nurses and physical therapists in the medical field that
have no knowledge about RSD. They assume you cannot be sick and you
are making up the symptoms. You have to be your own advocate and
fight for treatments. If I had cancer, no one would doubt the
disease, but I have RSD and some people do doubt it.
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