Educating Patients, Families and Health Professionals With Painful Neuro Diseases [Interview][Transcript]

Barby_Ingle_Neuropathy_Chronic_PainGuest: Barby Ingle
Presenter: Neal Howard
Guest Bio: Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author, and president of the Power of Pain Foundation. More information about Barby can be found at www.barbyingle.com and more on Power of Pain Foundation at www.powerofpain.org

Segment overview: In this segment Barby Ingle, Power of Pain Foundation President talks about her work with the foundation and their mission.

Transcription

Health Professional Radio

Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, glad that you could join us today. In studio today with us is returning guest Barby Ingle. She’s a sufferer of Reflex Sympathetic Dystrophy, she is the President of the Power of Pain Foundation, chronic pain Educator, and Patient Advocate, as well as a Motivational Speaker, and best-selling Author. She’s returning to talk with us about her Foundation the Power of Pain Foundation, and we’re gonna talk a little bit about what her Foundation’s goal is, especially with September being Pain Awareness Month. How are you doing today Barby?

Barby Ingle: I’m doing okay. Thanks for having me.

N: Great. When you were here before we talked a little bit about your personal struggle with chronic pain, some of the causes. And we also talked about how long it took you to get a proper diagnosis and thereby the proper treatment. It took years and several, well I say several because 42 doctors later is a little bit more than several.

B: Right.

N: You’re the President of the Power of Pain Foundation, why did you start this Foundation? And what is your Foundation’s goal?

B: We started the Power Pain Foundation because of the troubles that I was having in navigating the health system. It was started by my family back in 2006 and just specifically for … RSD. And within our first year we saw that the problem was bigger than just RSD. It was happening to everybody suffering with chronic pain. And it’s a hundred million Americans in chronic pain, there’s a lot of people that are needing help and they’re falling through the cracks. Nobody really teaches us about how to navigate the health system, this is something we should do in preventative medicine. As for children growing up, we should learn about these things. But until you fell something chronic, we’re not really taught about it. So by time that you have these types of problems, where do you go? Who do you turn to? For me I had to struggle on my own and my family saw that and came together. Now we went from a four person board back in 2006 to having over a 150 delegates, all of us are volunteer around the United States. So it has really grown a lot in the last 9 years. And I mention this to educate and support chronic pain patients specifically those with neuropathy conditions. We do that thru promoting public and professional awareness of chronic pain conditions, educating those afflicted with the pain or diseases and their families and friends, as well as healthcare professionals on the disabling pain it causes and how it affects your life on a daily basis. And we also provide action oriented public education and pain policy improvement thru our activities and efforts to eliminate undertreatment or overtreatment and mistreatment of chronic pain.

N: Now we’re talking about any type of chronic pain, aren’t we? Because it seems that when it comes to someone having chronic pain, we’ve all heard that “Oh fibromyalgia doesn’t exist. It’s just all in your head.” I’m a chronic pain sufferer myself of foot pain, and I’ve been told “Oh it can’t be. You’ve had surgery, how can your foot still be hurting you?” When it comes to this I guess for a lack of a better term, lack of empathy or sympathy or the person who’s saying “I understand that you did the surgery. I understand that you’re a surgeon, you’re a specialist, but what I’m telling you is whatever that you did or whatever drugs that you gave me – they are not working. My pain is still constant, it’s still chronic and it seems to be progressing.” How do you start the conversation with someone who you may have that respect for as a healthcare professional? Who has all the degrees on the wall, when you’re the person who doesn’t even understand why you’re hurting and you’re seeking help?

B: Right. Well you have to make the most of your medical visits. One of the things that I do is I created a one-pager. So before I go to each doctor appointment, I update it and on that one-pager I include all the medications I need, any refills I need and results they need, as well as all the recent issues that I’m having, is like I think of questions throughout the month until my next appointment. I took those questions down on paper, on my one pager. And they always ask me about all your surgeries, and there’s so many that I just use up to the bottom of the page. And then I also list my long-term care needs. And I use that one-pager to guide the conversation and make the most of the few minutes you get with your provider. While in the appointment, I’m assertive but I also listen to the other side. I know that the healthcare professionals have gone to school for many many years to do what they do so I do have respect for what they do. I also know that I need to be the chief of staff of my own medical team. And I do say “team” because I developed a team of doctors around me and I have my primary care physician as my head provider and all of my specialists, if they want to try new medication or they want to try a treatment they go thru my primary care doctor so that we can watch out for any contradictions in treatments, on medication or that type of thing. And so I use him as my co-leader of my team. And really do what I can to make sure that I’m getting the best care that I can. I had to become an expert of my pain. So many of us go into a doctor’s office and they say “What your pain like?” you say it’s a “12 out of 10.” There’s no such thing as 12 out of 10.

N: Okay.

B: You’ve have to use a scale that they’re using. You have to talk to the language that they’re speaking. Learning how they communicate and being able to use those same words is so important, even when it comes down to describing your pain., If you go in and say “I’m in pain” that doesn’t really tell the provider what treatment options maybe best for you. But if you can go in and say my pain is “burning, stabbing, searing, cutting bone pain, electric pain, cutting pain, pins and needles” whatever type of pain it is the more adjectives we can use to describe what you’re going thru, the better choices they can give you in your pain care. Another thing I do is I always ask “What did you learn in your recent conferences that you’ve attended in your continuing education?” Because if something worked a year ago or 5 years ago when they first prescribed it for you, there could be better things on the market now. There could be better treatment options, better medications. So you constantly you know at least once a year, every at least couple of years you want to be asking “Okay what else is there? Is there anything new? Is there anything that could take my pain from an 8 to a 4. And anything I can use in better management of my pain on a daily basis?”

N: Your website thepowerofpain.org are there resources on this website? For instance a medical glossary to explain to us what types of words that we should be using. If we just go to this website, are there like almost like a one sheet for those of us who are new, who maybe new to chronic pain or new to dealing with doctors when it comes to our own chronic pain?

B: Yes, under the neuropathy’s tab, on neuropathies in general there is a 1 pager there. And then we also spread it out. We have 46 of the different diseases listed out and we have information on each one of those – with symptoms, with treatment options, there’s a videos, support groups. And the … symptoms and the types of pain that people specifically experience with those condition or look at their which can helps your doctor better once you learn about what your disease is. We also have great resources in what we call “bookmarks” where you can use our “quick connect” form at the bottom of the website, on the bottom right. And let us know what your condition is and give us your address and we can send you bookmarks for yourself to help you communicate better with your providers as well as teach the people in your life about what you’re going through.

N: So basically it’s taking charge of your own healthcare and your own medical visits in order to get the best and actually the accurate treatment for your particular type of pain.

B: Absolutely. And we also with our bookmarks you can also go, we have an app that’s available on iTunes and android that has the bookmarks on there. So say you’re listening to this and you’re sitting at your doctor’s office right now, we can pull up the bookmarks for your condition and have that information right there with you on your phone at the doctor’s office.

N: And is this is a free app or is there a cost?

B: It’s a free app. All of our educational materials are free because we know that patients need to have the money to spend on their healthcare and get the treatment that they need, pay their copays. And so all of our educational materials are provided free to the public and to the patients in charge … that we work with.

N: Now I understand that you’ve penned a children’s book to teach kids to how deal with the family members, parents, grandparents, aunts, uncles who maybe dealing with chronic pain. And these children don’t understand some of the things that a person dealing with chronic pain may do or say. Being kids, it’s kind of a sensitive subject. Do you have any other resources that teach family members how to deal with someone who’s living, one of their loved ones who’s living with chronic pain on a daily basis?

B: Yes, actually I have. One of my book it’s called “The Pain Code, Walking Through the Minefield of the Health System” and it goes through a step by step of everything from becoming an expert on your illness, organizing your healthcare, your medical records, overcoming financial challenges, just to deal with the resources, insurance, reaching out making it a family affair and creating an oasis that will help you live better daily.

N: You’ve been listening to Health Professional Radio. It’s been a pleasure having you in studio today Ms. Barby Ingle. A sufferer of RSD and a Chronic Pain Educator, Patient Advocate, Motivational Speaker, best-selling Author, and also President of the Power of Pain Foundation. And we’ve been here talking about her Foundation the Power of Pain. And also how to take control of your own healthcare especially when it comes to chronic pain. And some of the many resources that can be found at her Foundation’s website www.powerofpain.org. It’s been great having you here with us again today Barby.

B: Thank you so much Neal.

N: Thank you. Transcript and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe to our podcast on iTunes.