RSD Interview #3 - with Theresa Wade

HOW AND WHEN DID YOU GET RSD?

My battle with RSD began in January 2011, although I did not know that at the time. I suffered a torn tendon during a fitness challenge. It was a 4 mile run obstacle course. I finished fourth in the race; I was very athletic at the time. I treated it conservatively, and it never healed. I had an MRI in March that showed it was healing, but the pain never went away. If I had known what RSD was at that time, that would have been my first clue. Instead, I kept it immobilized throughout April and May and had surgery in June of 2011. Again immobilization through June, July, and August. The foot never cooperated. I was not able to walk. I had constant problems. It never healed properly. Another MRI was done in September 2011. It showed RSD. I was officially diagnosed in my right foot in September 2011. It later spread up through my knee and hip, then mirrored to left ankle. I also have it in my right arm and hand, and have some tingling and numbness in my left two fingers and wrist. All four of my appendages are now affected in less than two years. The left arm symptoms appeared about a month ago.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I went from a 5K, 10K athlete to wheelchair bound and walking with a cane. I used to be a writer. It is difficult for me to type now. I am a teacher, and standing all day has proven to be nearly impossible. It is hard for me to grade. Every aspect of my life has been affected in some way. It is depressing to be fairly young and incapacitated. It is hard to pick and choose which part of my life to focus on. For example, if I spend all my energy at work, it is difficult to focus on family. If I work on graduate school, I can't grade papers. It is a juggling game, and I am usually dropping the balls and constantly in pain.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

My home support system is great. I would never survive without my family. They do everything to help me. My family is the sole reason I am here today. Without the love and support of them, I would not even bother to go on some days. My graduate school professors have been fantastic with me. They have been great about allowing me extra time to make up assignments when out or because I struggle so with typing and notes. I had a good support system at work until I got blood clots.

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

I used to spiritually question why God did this to me. Then I talked to a friend of mine and she said that asking why is pointless. I have been angry. I have been hurt. As I have moved toward acceptance that this is my life now, I realized that God gave me this struggle for a reason. I pray. My favorite verse is II Timothy 4:7, "I have fought the good fight; I have finished the race; I have kept the faith" I always repeat it on the bad days.

HOW HAVE YOU RE-INVENTED YOURSELF?

I have had to find other things to do to occupy my time besides be an athlete or be mad and brood. I have begun painting and I love it. I also read more, spend more time with my kids, and I have also started writing a book. I was blindsided with my RSD diagnosis, never having heard of it. I don't want others to feel like that. I also have accepted that who I was is not who I AM. I am not the person I was two years ago. She's gone. I need to focus more on who I am. Who I am is a good listener, a great personality, fun to be around, slower than others but not STOPPED.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

Well, I was able to find a good doctor that works well with me and we were able to find a treatment that works well most of the time. I have a spinal cord stimulator. I also have patient doctors that work with me. I have become closer to my family. I have learned that things I used to think were important, such as running a 25 minute 5K or being the fastest or strongest aren't as important as being alive and able to spend time with my family. I've learned priorities.

WHAT THINGS DO YOU MISS THE MOST?

I miss running. I miss feeling the wind in your face as your feet pound the pavement. I miss being able to bounce out of bed. Now it's a slow 15-20 minute process. I miss not having to plan trips. I miss sleeping with only one pillow. I miss not having scars all over my body. I miss being carefree. I worry so much now. Whether I have enough medicine. Is my stimulator charged? How many times will we need to get out on a trip? Will going shopping put me in bed tomorrow? Maybe someday.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?

I am a determined person. I WILL NOT let this disease beat me. I fight it every day. It is trying to take over my entire body. Right now it's winning, but in the end I will! I think having RSD has changed me. I have educated as many people as I can, but there are so many who do not even know what it means. I think that getting the spinal cord stimulator has helped, but now with the possibility of two looming, I get scared. The pain never goes away. It's a double edged sword of physical and emotional. Hopefully, people reading my story will understand that the things we do for RSD are like concealer. They cover up the pain, but it never goes away. It's always there. I hope to take it down someday!

Thanks so much for the opportunity to do this!

Theresa Wade