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
