Why I journal started in 2002. I was in a minor car accident. After months of getting worse, noticing new symptoms and doctors telling me it was all in my head I set out to find answers that make sense for what is happening to me. Many of the tests that were performed did not show any problems. Even so, my symptoms were still bad and getting worse. I went to see over 35 doctors. One doctor performed a vascular study on me and found a lack of blood flow to my right arm, neck and face. He insisted that I needed surgery right away. I was willing to do anything to get out of pain. I went into the hospital to have my first rib taken out to make room for my nerves and blood flow. I thought that this would fix all my pain, but I was wrong. The surgeon did a poor job with the surgery and I ended up with spurs growing on my stump of a rib and more severe pain than I had at the start. After five lung collapses, I went to a new surgeon. He did a body scan in 3-D and saw the problem right away. One spur went directly into my nerve bundle in my shoulder and the other went directly into my right lung. I had surgery a few days later on the rib to remove these spurs.
More to the story
Since about a month after the accident, I attended physical therapy, which was excruciating and seemed to make things worse. Finally, in May of 2005, I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and examine me. The thought of being examined again, and by a new doctor, was frightening. After the hour with me, he said he thought I had Reflex Sympathetic Dystrophy (RSD), a painful Neurological condition, and wanted to run yet another test. After testing, my diagnosis was RSD as all my signs and symptoms had pointed to for all this time. The thing is, I had a doctor four months earlier tell me that he was 100% sure that I did not have RSD. This same doctor did an electromyography (EMG) on me 6 times, which was awful enough, so the thought of a test that involved a needle was beyond scary. I had found a site on the web and put in my symptoms, even the ones that did not seem to fit with the others. After the site led me to www.rsdhope.org, I was sure that I did have the symptoms of Reflex Sympathetic Dystrophy. Why did my original doctors not believe me? They saw the symptoms, saw me walk into walls and pass out from the severe pain, and more. When my new doctor, suggested that I may have RSD my first response was, “Dr. X was sure that I did not.” But what test had Dr. X done to be so sure – NOT A ONE!
After finding so little information out there and having so many doctors try to treat me who did not know about RSD, I realized that I am the one who has to teach my caretakers. While teaching them, I have learned so much myself. I was inspired to make this book, journal and video series because they are tools I wish I had in my beginning stages of RSD. I know how important it is to have the big picture.
Chronic Illness Changes You
Chronic or life-threatening illnesses can have a devastating impact on your entire life. I have come to realize that I am the only one responsible for my health. Many doctors who are not connected with a research hospital or university do not have the time to keep up to the minute with the latest information. RSD is just one type of chronic pain. Reflex Sympathetic Dystrophy does not always respond to treatments that other chronic pain conditions would be regularly helped. As RSD is a fluid dystrophy syndrome, even among RSD patients there are differences in response to treatments.
Sharing this information with you in an easy to understand language has come to be my purpose. If I had a resource like this when I started, I would have spent a lot less time, money and frustration. As I have come to know, RSD does not yet have a cure and only a small number of us RSD’ers will ever go into remission. Do not lose hope. There is research going on and the government is taking notice of this debilitating syndrome. This book is intended for RSD patients and caretakers who have a need for more advanced, in-depth, medical information and tips for daily living; this information is not always readily available to you or put in terms that are easy to understand. Another goal of this project is to educate patients and their families about their treatment options so that they can better understand, communicate, and make informed decisions about medical treatments and the specific needs of the person with RSD in their life. This journal can serve as a starting point for communication between you, your family and team of doctors.
Lifelong changes
RSD and other pain conditions can be lifelong. This causes a significant impact not only on the patient, but on family and friends as well. The condition affects many aspects of the patient’s life in varying degrees. For me, the simple things are the toughest. Activities of daily living, personal grooming, and my social and personal life have all been affected. I lost my professional life to the bad days of RSD as well as to not being prepared for a catastrophic injury. I have had to adjust my daily routine because of the inability and difficulty of performing work-related tasks. When I created a journal I found that prayer, having a low stress lifestyle, and hope keeps me in a positive place mentally and my records organized, allowing for better healthcare. I have learned not to sweat the small stuff, to let go of troubles from the past and look for ways to better my future. With a good team around you, the same is possible for you.
Like most chronic pain conditions, RSD is an invisible disability. It is harder to get ahead or be understood when you have an invisible disability. Often times, people have misconceptions about people with disabilities. I choose to disclose my condition to anyone who will listen to let them know that RSD exists because of the importance of early detection and proper treatment to chances of remission. The more people I educate, the bigger the chances that someone else who has RSD will have it easier. I know what I live, and I want to help others.
Many Blessings, Barby Ingle
