The story of Barby
September 26, 2002, I was in a minor car accident. That 8 seconds changed my life. At first, I was told it was whiplash and I would be better in 3-4 days, but I was not getting better and months were going by. It seemed like the doctors I was seeing compared the minor impact accident to the pain and symptoms I was describing saw my symptoms as bizarre. Although I tried chiropractics, physical therapy, therapeutic massages and surgeries, my symptoms increasingly worsened. All kinds of test were done, in search of the problem. I underwent CT Scans, MRI’s, vascular studies, x-rays and a slew of medications. I began to wonder where I was going to get help as I was losing my life. I saw many specialist who looked at one aspect of my symptoms and treated that issue. After a shoulder surgery, 1st Rib resection with complications, and relentless burning, stabbing, shooting, electric pain, over 30 doctors and a multitude of other tests and procedures, I was literally giving up on life.
Finally, my neurologist suggested I see a pain doctor. This was now 2005, almost 3 years after the accident. I found a godsend of a physician. He saw the big picture and my first appointment took almost two hours. He seemed to truly care about his patients and he wanted to help me. My doctor truly listens, discusses options with me, and always answers my questions and concerns. He diagnosed me with reflex sympathetic dystrophy (RSD) a rare neuro autoimmune disease.
The pain I experience is severe and relentless. I have had to receive help getting dressed, showering, getting to doctors, cooking, cleaning, shopping, ECT… Through it all, piece by piece, I am rebuilding a life. It is different from before, but I am doing things now that I never would have without the motivation to find a cure. I am a person who never gives up, stays as positive as possible and never takes a minute of life for granted. I am now on permanent Social Security Disability. Not where I thought I would be in my lifetime. It is a big life change and it has been hard. Through all of this, I have learned that how we handle disappointment, failure and stress is something we can control and do have power over. This battle with pain I endure makes me stronger as a person. The most important thing in life is the relationships with other people in our life. With all the guidance of prayer and the support of my family, I have been able to face my new life head on and with continued hope.
I do have my moments of sadness of what I have lost, but I choose to look at it like this; I was able to do so many things that no one else gets to. I had my own successful company, received national awards for my abilities, coached at a Division I-A school for eight years including coaching at the Sun Bowl and twice at the Rose Bowl. I had achieved and accomplished all of my dreams and was taking life for granted before my injury. Through the pain, I have learned that motivating, inspiring and leading is my calling and that is exactly what I was doing, before RSD, through cheerleading. The life skills I learned from being an athlete and part of a team growing up are helping me through the trials and challenges I face today with RSD. Have you ever noticed cheerleaders keep cheering when their team is losing? Life is the same way, you can choose to keep cheering and focus on the positives being accomplished or you can choose to focus on all you lost or no longer can do.
Because I kept being a Cheerleader of HOPE… I became chronic pain educator, patient advocate, and President of the International Pain Foundation, as well as a motivational speaker and best-selling author on pain topics. I have actually has been a pain patient since developing endometriosis in 1997. With endo being much more known I was able to receive proper and timely care to overcome the chronic pain that was not so easy with RSD. I began mentoring other patients in pain in 2006. I also serves on the board of advisers for CureClick, is a member of SPPAN, and a founding member of the Consumer Pain Advocacy Task Force. I have been in and out of ‘remission’ since Dec. 2009.
Unfortunately, so many other patients experience my story. I now share my knowledge of overcoming the challenges that we face every day with our activities of daily living. I had to learn the hard way and now want to pass on my knowledge to give hope and answers to all patients, caregivers and healthcare professionals. I hope by speaking out about my journey stops it from happening to anyone else.
I have become very active in trying to get help for other patients so they do not have to go through what I have endured. I turned to my family a few months ago with a challenge and they came through. Working together for the cause of finding a cure, they developed a non-profit foundation to help others who are suffering with RSD and do not have many resources or know where to start for help. The foundation will be able to reach people on an international level and make their life better. My advice to other RSD patients is never give up and never give in. You can find out more about me atwww.barbyingle.com and more about International Pain Foundation (iPain) at www.internationalpain.org