Interview with Author Barby Ingle

1(a). What inspired you to write your first book related to pain issues? In 2002, I was in a minor car accident and diagnosed with whiplash. Willing to do anything to get out of pain, I went into the hospital in November 2003 to have my first rib taken out to make room for my nerves and blood flow. Earlier that year I had also undergone a shoulder surgery. Then in 2004, I had to undergo an additional rib resection surgery. 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 look at me. The thought of being examined again was frightening. After finding so little information out there and having so many doctors, who did not know about RDS, try to treat me, I realized that I am the one who has to teach myself and my caretakers. While teaching them, I have learned so much myself that I was inspired to write RSD in Me, to share the tools I wish I had in my starting stages of RSD. I want others fighting the same battle to have the whole story and know they are not alone. In my research, I have found very little literature that tells the whole story; I know how important it is to have the big picture. 1(b). And what inspired you to write every book thereafter? After I achieved remission, I wanted to tell the most hopeful part of my story to let others know that there should be hope and that there is help! That is when I shared the remission story in my second book; ReMission Possible. My third book came about because a patient asked me to explain how I walked through the health system and got the help I needed. It is a behind the scenes look into access to healthcare issues; The Pain Code. I also developed a workbook to go with the book, as a tool patients can use to walk through the minefield of the health system successfully. 2(a). How many books have you written, thus far? I've written seven, but only four of those are on RSD/Pain. My works include: The Cheerleading Coaches Handbook – how to coach cheerleading and dance Cheerleader; The American Icon - contributor The Wisdom of Ingle; Fall Down and Get Up in Half a day RSD in Me! A Guide To Living With RSD And Other Chronic Pain Conditions Remission Possible; Yours If You Choose To Accept It The Pain Code; Walking Through The Minefield Of The Health System The Pain Code; Journal And Workbook 2(b). And which is your favorite? My favorite is yet to come. It is Aunt Barby Hurts. I am working on this project with my brother and it is about having a relationship with children that is strong and healthy even if you have chronic pain. My brother is also a chronic pain patient and I am closest to his son, because he took the time to teach him from birth how to interact with me, so it hurts the least. So I am currently working on the children’s book; Aunt Barby Hurts and a book about keeping intimate relations strong with my husband; Real Love and Sex for a Chronic Pain Patient and Their Partner. I am also working on a follow up book to The Wisdom of Ingle with my father based on life lessons we have learned and want to pass on to future family generations and the world; The Wisdom of Ingle; All I ask is you try your best. Once I am done with these I will have reached my goal of being a part of 10 books being published and will probably end my publishing career. 3(a). What would be an average day in your life?  Wake up at 9am. Take my medications. Brush my teeth. Spend a few hours with my husband. Eat brunch. Answer some emails. Take a few phone calls. Send Ken off to work. Take a nap. Answer some more emails. Eat dinner. Watch a movie or some TV. And head to bed. I don’t do much physically at all. I try to avoid injuries and traumas at all costs. And, if it is a rainy day, I spend most of the day, if not all, in bed. I try to travel out of town to do events only once every 2 months to help save my energy and keep me feeling good. And I try to do one awareness event a month when I am home. It could be an online event or something going on here in Arizona. 3(b). And what would be an average day of the foundation? The Power of Pain Foundation (POPF) has over 100 volunteers; board members, ambassadors, event volunteers, and executive staff. Each of us does our part to keep the foundation going. We do everything from our mentor program, setting up conferences, sending out resources packets and speaking publically on legislative issues involving access to healthcare. With each of us doing our part, it takes the pressure off the rest of us. It is great to work with the POPF team to put a big spotlight on pain. 4. In this “alternate life”, what do you most like doing; writing books, writing grants, public speaking, etc (?)  If I could have back, what I thought my lifetime career would be, I would be coaching collegiate cheerleading and dance and still running my former company; Cheertec, Inc. 5. Is it safe to say that there’s a parallel between your pre-RSD life and your post-RSD life, in the sense that you were a cheerleader then and you’re a cheerleader now, just that one was physical and one is not.  There is such a parallel. I remember being 4 years old and my father took me to a professional soccer game where there were cheerleaders on the field. I was hooked! I told him that I would be a cheerleader the rest of my life. He told me that was not possible. After my accident and developing RSD, I thought he may be right. One thing I learned as a cheerleader, the game isn’t over until it’s over. So keep the hope, keep the smile, and keep the spirit. I readjusted my thinking and found another way to be a cheerleader. I am now a mental cheerleader. A cheerleader of hope and inspiration! I will forever be a cheerleader! *\O/* 6. In the same vein, who has been your biggest cheerleader?  I have had three major cheerleaders over the past 11 years. My biggest cheerleader has been my husband who I met 10 years ago. He has been with me every step of the way. Second, is my father who has been there for me since the day I was born, who has hopped on a plane at the drop of a dime to come help me and Ken get through whatever we need help with at the time. And the third is Paula Abdul. She has shown me that you can still live life to the fullest as an RSD patient. If she can do it, so can I, and if I can anyone can. Her calls and messages mean the world to me! 7. Another parallel would be being part of a team, which you were in your cheering/coaching days and you are now with Ken. Do you have any advice or encouragement for others who may not have that benefit? I would say to those who don’t have a great support with their relatives to remember that family is who you make it. If you are not getting the support from your immediate family relatives, turn to other places. Reach out to local church members, support group members, positive people who can help you and encourage you, as needed. But, even with so much support from the family I have and have made, I have come to realize that I am the only one responsible for my health. Search out resources! If I had a resource like the ones available now, this when I started, I would have spent a lot less time, money and frustration working towards remission. Do not lose HOPE. There is research going on and the government is taking notice of this debilitating disease. 8. Tell us about your current condition i.e. how well do the Ketamine boosters work for YOU? Meaning, do they lower your pain or remove it altogether? I am currently in “remission”. I have come in and out of remission since Dec. 2009. The ketamine infusions can bring my pain down to a 0. I am still greatly affected by barometric pressure changes, but instead of a pain level 10 with vomiting and passing out. When the infusions are helping and I am in “remission”, my pain goes up to 2-4 pain levels. Which is nothing to complain about since before infusion therapy I was constantly at 9-10 and the best any treatment option did for me was lower my pain temporarily to a 6. I am very pleased with my progress, remission and long-term outlook. 9. Do you get boosters on a set schedule or an “as needed” basis? I get my boosters on an as needed basis. The shortest between booster infusions has been 2 weeks and the longest has been 4 months. In Dec. 2009, I was fitted for an oral orthotic which lowers brainstem inflammation. That has helped me a lot with balance, coordination issues. It also helps me wear shoes that enclose my feet. Up until then, I was unable to wear shoes for more than a few minutes at a time, even with the infusion therapy. 10. What new projects do you have coming up in the near future that you‘re free to share with us? My two biggest months of the year are September for Pain Awareness Month and November for RSD/Diabetes/Neuropathy Awareness Month. This September I will be attending PAINWeek, leading a Pain Pathways Magazine FB chat, speaking at PAIN Summit, featured in the USA Today Chronic Pain supplement, and participating in 2 radio shows. In November, or NERVEmber as I call it, I will be hosting Comic Pain Relief show here in AZ and also hosting 30 days of awareness tasks through the Facebook NERVEmber page. I am also scheduled to be on the cover of a national magazine with some special friends of mine. We already shot the photos and I can’t wait for everyone to see this project. Most of all, I like to take on projects that give me extended time to work on them so that I don’t have stress or pressure in my daily life. I also like to complete tasks versus ongoing projects, so I take on projects that are short term and I can better handle them, making them more successful. Thank you, Barby, for sharing with us and giving us a closer look into your life. I've enjoyed hearing your story of remission, the hope of all chronic pain sufferers. Thank you for all the good work being done by the Power of Pain Foundation, and much success to you in future endeavors.