In 2004 I was a school bus driver (and mother of 2 active kids). I had a 12 yr old beat me and change my life FOREVER!! After the accident I had brain damage, jaw wired shut, and lost the ability to walk on my own. I can’t use my left leg anymore (which is where the RSD started).
I became severely depressed, I was no longer able to coach baseball/softball for my kids, be a Girl Scout leader, or even play with my children! I was is so much pain, nothing helped, I didn’t know anyone with this illness and was told by so many that it was all in my head!! I had a plan of exactly how I was going to take my life because I felt as though I could NOT live like this anymore. I had even offered my husband a divorce so he didn’t have to deal with this. I lost EVERYTHING!!!
Then one day I was referred to Dr. Kristine Rea, and things started to change…. slowly (over many, many years), but any change for the better was more than what I had. Dr. Rea had NEVER seen anyone with my condition before, so she made a promise to me that she’d do everything to learn and try to help me. We tried every treatment she could think of, from opiates and narcotics, to spinal blocks, epidurals, trigger point injections. Then came the surgeries… I had an SCS implant (trial passed, but implant failed and had to remove it), we tried another 3 SCS implants without success. I felt like all hope was slipping away! I told my doctor I was getting more and more depressed and was put on stronger antidepressants.
Then one day it clicked in my head that I can’t sit back and let my doctor do all the work. I needed to take control and advocate for myself… do my research and become part of the solution instead of the guinea pig!! That’s when I found the US Pain Foundation and others like myself (the CEO Nichol has RSD too)!! They taught me I’m not alone, and showed me how to not only advocate for myself, but to be able to advocate for others as well!
I went back to Dr. Rea and showed her all I’ve found and that’s when she introduced me to Dr. Wellington. I don’t trust doctors easily, but he was greatly reassuring and swore to me everything in my care is up to me and if I don’t feel comfortable with one treatment we’d try something else. He gave me the option of trying another SCS ( which he was upfront with me saying it probably wouldn’t work since it hadn’t before) and doing an intratheical pain pump. I chose the pump. At first we were just using dilaudid, but after several increases it wasn’t fully helping so he also added Bupivicaine. It greatly helped!! I’m NOT 100% pain free, but I’m on the right road.
So now I spend my days advocating for other warriors like ourselves, helping to educate others, help with support groups, leaving Info in doctor’s offices to educate others, help with art therapy, and of course making cards for warriors… each card is hand made and no 2 are the same!! I’m also ALWAYS here to help other warriors any way I can, just reach out to me!!