“When I first got diagnosed with RSD, a disease I have never heard of, I went on the Internet for information about the disease. What I found was I had a horrible progressive neurological “pain” disorder. I also found that there wasn’t much information out there but a whole bunch of chat rooms of people complaining about their “pain” disorders . Unfortunately 99% of them did not have RSD and I refused to let myself go to a place of negativity. While I was searching the Internet for information I decided to do an Internet search for books about RSD. The first book I found was “RSD in Me”. I ordered two copies of it. One for me but also one for my loved ones so they could understand what I was going through. From the moment I started reading that book I could not put it down. It was like I was reading my life. For the first time in five years I felt like someone understood my pain and what I was going through. For five years I kept telling doctors about my pain and they kept misdiagnosis it. It wasn’t till I changed doctors that I got diagnosed. By than the disease had progressed to where there already signs of irreversible damage. Your book helped my mom understand what RSD was and when I said I was in pain what that truly meant. Our relationship has never been stronger and your book is a big reason. She did not understand pain disorders like so many other people don’t and by sharing your very personal story you show what it is like to live with an invisible disabling pain disorder. I than went on to discover your foundation the Power of Pain which I follow on Facebook. Since I have been diagnosed in September of 2012 you have been my cheerleader motivating me everyday through your amazing work you do with the Power of Pain and the books you have written. Without the book RSD in Me I truly do not believe I would of been able to communicate to my mother and my husband exactly what I was feeling everyday. You may wear a different uniform now but you are my true inspiration. Please never stop believing for a second that RSD took anything away from you. It may of changed your life. As my mom says to me now when I get upset about what I used to be like. “You may never get back to that but maybe there was a reason you needed to slow down to appreciate everything around you.” Keep up the amazing work you do Barby!”
– Amanda Carney-Hansen
RSD Pain Patient, submitted through Facebook
“Thank you for your energy andbrightness, for your kindness and compassion, for the light you shine on the world. Thank you for your time on Saturday, May 17th, 08. I enjoyed yourseminar, thanks for some of the insights provided to me. May the Hope you gaveto those here continues to be encountered by you and all those you meet. Many Blessings”
– Cathy Bergman, St. Andrew’s
“Thank you for thisinfo! My husband went through a trauma surgery, was ventilated for two and half months was in a coma for 2 months, in rehab for P.T. for 4 weeks, cannot walk, cannot use fingers, has burning pain… no one could tell me exactly what the problem is. You have given me some valuable tools! Thank you.”
– Pat Eaton, Caregiver
“Everything you and POPF are doing and the inspiration and strength you give to all those around you, you truly deserve to be recognized for what you give back to others. So many of us would be lost without you and organization. You are truly a living Angel”
– Sara Hobbs, Pain Patient
Your interview was fantastic! I enjoyed listening to you share your story on the Bill Martinez show. I appreciate your honesty as you shared your medical history, and the importance of asking questions. I agree that we should be taught to question our doctors, and not just believe everything they say. Thank you for sharing that we need to step up and ask our doctor’s to change, or negotiate our medical bills. I wish that you could have been on longer. You did a wonderful job. I appreciate you Barby, and I learn more each time I hear you or read a article you have written. Thank you for caring and being a friend and mentor to each and every one of us through your radio shows, newsletters, tv shows, books, facebook, and the POPF.
– Jodi Dragon, Pain Patient
“Barby, Thank you for sharing your book with us. I was appalled and dismayed by the difficulty you experienced in finding anyone who was able to diagnose your condition for the prolonged period it was undiagnosed and I was truly moved by the suffering you endured at the hands of the thoracic surgeon who diagnosed the problem as thoracic outlet syndrome and then the botched surgery with subsequent damage to your lungs and nerve plexus secondary to the spurs. The 3-D reconstruction certainly told the story as a picture is worth a thousand words. When I read the book I was not sure you intended for the audience to be medical professionals or lay persons then I realized it was for both as you wove your story. I believe it would be difficult for the average lay person to understand some of the technical details however; the advice for patients with RSD in Sections 3 and 4 would be extremely helpful. Best regards and blessings.”
– Frank Moorhead, M.D., Healthcare Professional
“Dear Barby, I received the pamphlets you sent out to me. Thank You so much, I like your pamphlets a lot more than ones I’ve had and seen, you break down important facts, not everyone gets the as I’ll put it “By the Book changes”, I’ve met many RSD’ers in my 16 yrs. of having & dealing with it and we all get hit in different ways, some people sweat, some always cold, I like how they are put together in your pamphlets. It gives a not so brain surgeon break down. I would love to get together and meet and talk with you on possibly jumping on board and helping your Organization in any way I can. You should be very Proud of yourself, the website is Great. I plan on ordering your book and I feel like your the person I’ve been looking for. You’re a Blessing to us All whom Suffer!!!!!!! Gentle Hugs!!!!
– Lillian, Buckingham, VA, Pain Patient
“Barby, the more you accomplish the better we feel. You go girl… you have to have patience to do what you do. Praise god for his strength in you. We need a voice as a cry in the wilderness. Don’t stop, Please. Thanks, God bless you Barby”
– Thomas Kane, Pain Patient
Barby is a wonderful person to work with. She tirelessly advocates for patients suffering from chronic and intractable pain. She is a go getter and I would love to have the chance of working with her again!
– Dr Patty, Healthcare Professional
“Hello Barby, I have so much enjoyed talking with you and following all the wonderful things you are doing for RSD/CRPS, for sharing your story, with being able to help pain sufferers as well as us as caregivers. I have learned so much from you, Barby you have been a blessing to me and my precious daughter, Stacey. Please be careful and take care of yourself.”
– Barb Fluck, Caregiver
“Great Job Barbie! You got a lot of information in your segment. Your voice was great, you were clear and you didn’t speak too fast.Awesome Job, be proud of yourself, you are turning into a media angel for awareness and empowerment!
~ Kimberley Courtney, pain patient