HOW AND WHEN DID YOU GET RSD?
In May of 2001 when I was fifteen, I decided to take my three year old niece for a walk to go see a rooster in our neighborhood. While I was carrying her back home, I slipped in the grass and twisted my left ankle in a ditch. I fell, then she fell on my ankle, knocking it against the sidewalk. The next day I went to the hospital, they said it was just a sprain, and they put me on crutches. A few months later while walking to school, I twisted my ankle again on some tree roots. After those two injuries, my ankles became very weak and would give out on me, or twist whenever.
It became very painful. I have been to a countless number of doctors, specialists, surgeons, etc from May 2001 to date. None of them were able to diagnose my problems, even though I had several tests, x-rays, bone scans, MRIs, and CT scans, which all came back normal (showing no trauma or injury). The doctors never believed me but I knew the pain I had was real, and it was terrible. The doctors kept putting me in casts or braces, and made me use crutches. I was on crutches my entire high school life. They all kept telling me it was all in my head, and that I was just stressed or depressed. And they were right about me being stressed and depressed, because I knew I had the pain but could not figure out how to get anyone besides my mother to believe me and try to help me find relief from it. I can almost predict the weather with this disease, as the pain becomes excruciating whenever it is about to rain or snow or the weather is extremely cold.
I have had a lifetime’s worth of physical therapy but, finally, praise GOD, I went in to see my primary care doctor who, by the way, is one of the most caring and knowledgeable doctors our family has ever come across, and he diagnosed my pain as RSD. It was confirmed by my Pain Management doctor as being RSD, and now I could begin the research on trying to find relief for “my disease” that finally had a name attached to it; Reflex Sympathetic Dystrophy (RSD).
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD has affected all aspects of my life, in every way. Before the RSD started affecting me, I was a vibrant person that wanted to became a Graphic Designer. After the pain started, I had to drop out of college and stop working because I was not able to concentrate while in pain, and my mind was foggy from pain pills. This disease made me feel worthless as a person, and a failure as a parent. It changed my relationship with my son because now I'm not able to run and play with him like I used to. We used to be inseparable, and everyone that knew us loved our relationship. Since he doesn't really understand what I’m going through, he is starting to act out in frustration, and I'm not really sure how to help him understand. We have a lot of kids in our family but I'm not able to attend family or church events anymore, because of being in fear that someone will accidentally bump into my ankle and cause me severe pain.
I constantly fear walking because of the thought of re-twisting my ankle. This disease took away my passion for living, working, and drawing…and I LOVED TO DRAW!!. Now all I do is sit around and cry, and cry some more, or go to doctor’s appointments, and cry more. I go days and nights without sleep. I'm ALWAYS depressed.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, I have a very good support system. My family is my rock. They are a gift from GOD and are always there, whenever I need them. My mom comes over and prepares meals for me and my son, when my pain is bad. Finally, starting February 18th, my step-dad will be driving me to and from Richmond every day for 2 weeks so that I can get the Calmare treatments that we found out about during our research for a treatment of RSD. I’ve also met some wonderful people on the RSD Facebook group that give me advice whenever I need it.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, faith plays a big part!! As a Christian, I always pray and ask GOD for strength. If it wasn't for my belief in GOD, and love for my son, I probably would have given up a long time ago. Although my belief is strong, I have asked God many times "why me, why am I going through this?" but then I remember that God wouldn't bring us to something without bringing us through it, and He never gives us more than we can handle.
HOW HAVE YOU RE-INVENTED YOURSELF?
I try to educate people, and spread awareness as much as possible. I have more understanding and compassion for people who are dealing with some sort of disease.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
Even though this disease has changed my life, it has made me stronger. I don't feel judged anymore, when I ask for help, and I don't take the small stuff for granted anymore.
WHAT THINGS DO YOU MISS THE MOST?
I miss going to college.
I miss my passion for drawing and graphics.
I miss my close relationship with my son.
I miss going to family and church events.
I miss wearing my sneakers.
I miss feeling like a person.
I miss the ability to live a normal life.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
Although my foot and ankle look normal on the outside (and I walk normal), the inside of my ankle bone feels like it's being cut open, while being on fire. And it hurts like hell to walk, but I refuse to give up on walking. I may cry and get discouraged, but I am a fighter and will never give up. There may not be a cure for RSD, but I will keep striving to live a somewhat normal life. I will be a walking testimony, praise GOD! People need to know that it is a chronic neurological disease that can affect anyone at any age, and may affect everyone differently, and that everyday life is a challenge for us. We may be able to do something one day, and the next day we may not even be able to get out of the bed. The public needs to know and understand that we are not making this up, this is not just “in our heads”. RSD is REAL. We are not mentally ill. We are not drug addicts. We are normal people who endure abnormal pain 24/7 365 days a year, and are just trying to live a normal life, aside from chronic pain.
Amee Forbes
God Bless
No comments:
Post a Comment