The reason behind Painful Accessories is to promote RSD/CRPS awareness. I do many special orders if you are looking for a certain color, or are wanting something in bulk. Please look around, and feel free to contact me at PainfulAccessories@gmail.com.
So let me begin by explaining a little bit about what RSD/CRPS is exactly.
RSD (Reflex Sympathetic Dystrophy) or CRPS (Complex Regional Pain Sydrome) used to be called Causalgia. It is a chronic neurological syndrome which causes severe pain in those who suffer from it. Some of the symptoms include burning pain, changes in skin and bone, excessive sweating, swelling of the tissue, extreme sensitivity to touch, and many many more. RSD is considered a chronic pain condition but it is so much more than just that. Function is often lowered if not lost completely in the affected area of the body in addition to excruciating pain that measures on the pain scale higher than that of a child birth, amputation, or cancer. Imagine having acid thrown on your body, than being lit on fire, and thrown into more acid. This is the day to day life of someone with RSD/CRPS.
I was diagnosed with RSD in April of 2008 following a head on collision in October of 2007. That was the day my entire life changed. I went from being an excellent, dedicated, hard working student to someone who lost all motivation to do anything. Even live. It was a very dark time for me, as it is for very many people. Sadly people often commit suicide due to lack of relief from this unrelenting pain that follows them non stop every single day of their lives.
After multiple appointments with an incompetent doctor and multiple failed Stellate Ganglion nerve blocks, it was agreed that a spinal stimulator was our best route of treatment. We were wrong. After a 4" incision in my hip to place the battery, and a lamenectomy (removal of vertebra in neck) with 9" incision on my neck to place the leads, the RSD had spread to the incision sites. This was very common yet, sadly I was unaware of this. After two months, I had shut the system down. I was in too much pain.
About two months later, the RSD had spread so wildly, I was bound to a wheelchair. I couldn't walk, I couldn't remember anything. I couldn't concentrate. I was in constant searing pain constantly. My mother flew to South Dakota to help me since I couldn't take care of myself and my husband at the time couldn't take off work any more. My mother fought and fought and fought until she was blue in the face to get me a real RSD specialist. We found one! He was 8 hours away in Colorado Springs. After my first appointment with him he decided Ketamine infusions were the best route for me. He said he had never seen anything like my case before in all his years in pain management. This news didn't really comfort me, but I do know now, I was not alone in this battle for I have met multiple people who suffered just as bad, and some worse, than I had. After day one of my first outpatient infusion, I took my first step in over three months. It was amazing. By the end of the last day, I was 100% pain free! It was amazing! Two and a half years, three surgeries, and two stateside moves later, it came back. Again within a matter of two months I was back in a wheelchair. Not only did I have my mother taking care of me but also my best friend Jess and my wonderful husband. We now had to find a new doctor since we had moved across the country. Again, my wonderful mother found him, only this time he was in Winston-Salem, North Carolina. I was in the hospital for six days in the ICU receiving my ketamine. Again, I was almost pain free. I could return to normal life.
I know I will have this disease for the rest of my life. I know I will constantly need treatment and medications to keep my day to day pain under control. But I have realized who my true friends are, and what true love really means. I have to find a silver lining in everything. If I don't, there is no way I will survive this life I was given.
This is why 50% of all the proceeds will be donated to CRPS Partners in Pain. They assist with expenses that come along with treatment, medications, air fare, gas money, hotels, and sometimes food, for people who cannot afford treatment on their own or who have insurance that deny the ketamine infusions they so desperately need. Please click the website below and read all about Nancy's story and how Partners in Pain came about. Thanks!