Saturday, October 19, 2013

RSD Interview - With Dannel Leon

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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