RSD Interview With Noelle Lopez

HOW AND WHEN DID YOU GET RSD?

In March of 2001, I slipped and fell down a flight of stairs, causing an ankle fracture. Over the next three years, I had six corrective surgeries. After the last surgery, the expected recovery did not happen. I developed severe burning pain, swelling, and had color changes in my left leg and foot. Suspecting I could be developing RSD, my ankle surgeon placed me in rigorous physical therapy and began the Neurontin protocol. Despite this, I did not improve. I was referred to a pain management specialist and anesthesiologist, who diagnosed me with RSD at the age of 24, on my birthday in February of 2004. Since then, the RSD has spread into my hand, arm, and upper back on the same side.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

RSD has affected my life in so many ways. I now live with unrelenting pain 24/7. It's like an annoying side kick that never leaves! I must plan my life out in advance. I have endured numerous Stellate Ganglion and Lumbar Sympathetic Blocks, medications with unpleasant side effects, grueling physical therapy, and spinal cord stimulator trial, surgery, and revisions. I now struggle with anxiety when my pain levels are high.

Finishing college, working, and having a busy social life are all things of the past. I've accepted that right now I can't do those things, but I never give up hope that I can do them once again.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

I have an amazing support system. First and foremost, my husband and best friend, Alberto. He is my rock. We met about eight months after my diagnosis. He's been with me through it all, and I couldn't imagine life without him. My parents, also, are a huge source of support for me. Anytime I need help with basic day to day activities, like grocery shopping, they are right there to help. My entire family and friends have supported me since day one.

I must give credit to my dog Bear; ninety pounds of pure, furry love. He knows when I'm flaring, and won't leave my side. Finally, I want to mention my pain management doctor. He is an incredibly knowledgable and compassionate doctor who has provided me with excellent care since my diagnosis. I'm so fortunate to be surrounded by such caring people!

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

I am not a religious person, but believe in peace, love, and kindness. I do have hope that one day we will know more about what causes RSD, and better treatments, or even a cure, will be discovered.

HOW HAVE YOU RE-INVENTED YOURSELF?

I enjoy lending support to others with RSD, spreading awareness, and fundraising for RSDSA.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

If I were answering this question several years back, my answer may have been different. Today, after living with RSD for nine years, I can say a lot of positive things have come from this. I have learned to truly appreciate the small things, and let go of the negative in my life. I've discovered an inner strength I never knew I had. I consider myself an RSD Warrior. You have to be strong to endure what we go through on a daily basis. I have also connected with some amazing people through RSD support channels. One of the best things that has come from this is the strength I get from knowing I can persevere despite being dealt a very difficult hand. I've made it through things I never imagined I could (before my diagnosis).

WHAT THINGS DO YOU MISS THE MOST?

The number one thing I miss the most is the ability to be spontaneous. I no longer have the luxury to do things like go out to dinner or see a movie without planning several days in advance. When we do go out, I must make sure I have my medications, stimulator remote, comfortable clothing, etc.

I also miss working. Although I do part time work mainly from a home office, it is not satisfying or what I had planned for my life. I've always had a job, even working full time in high school. At the time I got injured, I was a pharmacy technician and pre-pharmacy student in college, with aspirations of attending pharmacy school. Now, when I hear my husband or friends complain about long days or problems at work, I envy them. You never know how lucky you are or what you will miss until it's ripped away from you.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

I want the general public to know what RSD is, and how it impacts my life and the lives of my family. I want them to know that I struggle every day and life can be very hard. Despite this, with the help of my support system, I can persevere, and have some semblance of a normal life. Finally, I would like everyone to know that I am strong and I do not let RSD or what it's done to my body define me. I am not a victim.