Wow! I cannot believe it has been twenty years, two full decades, that I have been in this fight against RSD. Do we say Happy Anniversay? It doesn't seem fitting to celebrate this milestone, does it? Oh but it does! In those first few years I was a simple survivor grieving for the life I lost. Slowly I learned how to fight back and become the warrior I am today. I no longer grieve the life that was or could have been because, let's face it, living with this disease has been more than half my life. I don't know if I will ever go into a full remission but I won't give up. I have come too far and have lived through too much!
Twenty years is a long time. Through these two decades I have had 100 epidural blocks, with 2 week long catheterizations, a spinal cord stimulator implant at age 21 with 6 revisions, and I have been on numerous medications.
During the past twenty years I graduated high school and despite the fact that I had to medically withdrawal from college I was able to work after my spinal cord stimulator surgery. I met a wonderful man and together we built a beautiful family. 7 years ago I had to stop working because of my health and I was approved for Social Security Disability. I also had to stop driving at the same time, I still have my license, this was a decision I made based on safety.
In the last twenty years I have witnessed a huge change in the medical industry. Back when I was first diagnosed you couldn't find any information about Reflex Sympathetic Dystrophy which made it difficult to be taken seriously about the level of pain I was in as people challenged the legitimacy of my health disorder! The medical community was in the early learning stages, a doctor confided to me that RSD was a two line paragraph in his education and that the only way to learn was by finding a good doctor who was treating patients. Normally this wouldn't inspire confidence but we were in a teaching hospital and I was basically a kid!!! Even my neuro stimulator has been receiving a constant evolution. I feel like each surgery they have something new to introduce to me! Well, actually I am always researching to stay on top of all the latest information and advances being made. After all it was only a year or two after my diagnosis that they made the name change to Complex Regional Pain Disorder and then shortly after that they named a type one and type two, all of this because it better defines the disorder for the medical community. Remember the first name was not RSD but Causalgia.
Twenty years, two decades, is a long time to fight a major health issue. I plan to keep up the fight for many more decades praying that one day we will find a cure!
