TV Talk Show Interview
Living Well with Chronic Pain
Channel 58/Linda Lee Landon/Focus on Denver/The Peoplehouse Show
VHS Tape available upon request
Today, award-winning author Jude Willhoff is here with us. She is a woman living with Arachnoiditis which is clumping of the nerve roots, chronic pain syndrome, which is constant pain that never goes away and a spinal cord implant. And what amazes me is nobody knows she has all this going on unless she decides to tell them. We’ll be talking about her book, Living Well with Chronic Pain. She’s going to help our viewers who suffer with chronic pain. Hey Jude, welcome to our show.
Thanks, I’m happy to be here.
1.) Jude, what are your credentials for writing about chronic pain?
When I was first diagnosed with chronic pain syndrome I was lost and scared. I went searching for answers from doctors, libraries, hospital libraries, bookstores and the Internet, everywhere I could think of. What I found was mostly dry, depressing academic articles and books written by medical professionals in the field. They were telling me that people who are diagnosed with chronic pain commit suicide. What I was searching for was information from someone else who had this condition and was beating it on a daily basis. Grasping at straws, I desperately needed hope and help and I wasn’t finding any. My doctors and friends convinced me to write this book to help others.
My credentials are that I’m a person living with chronic pain twenty-four-seven. I know pain inside and out. I t’s been with me for the past nine years. And in order to gain control of my own chronic pain I’ve had to do tons of research on the subject. I’ve obtained information from the American Pain Society; the American Pain Association; the National Foundation for Treatment of Pain, and the World Institute of Pain and Medtronic, a world leader in medical technology, pioneering pain therapies which restore health, extend life and alleviate pain just to name a few.
2.) What’s the main reason you wrote this book?
I want to help others suffering with chronic pain. While I was going through rehab at a pain treatment center, I heard about a wonderful artist in Colorado Springs, Star Kemp, who had committed suicide because of his chronic pain. It really touched me. The man was incredible, his sculptures are known worldwide. I never knew him, but I kept wondering if he knew about the pain treatment center, if he was there with us, if he would’ve had the courage to take his life back from the pain. Maybe his life wouldn’t have ended that way . I’ve thought about his situation so many times and realized I was right there. Unlucky enough to have this disease that destroys people, but lucky enough to still be here. At that time, I decided I was going to beat this monster and somehow help others suffering with this condition.
So I have written the book I needed to read when I was diagnosed. Living Well with Chronic Pain shows those diagnosed that they are not alone and the feelings they are experiencing are normal. They aren’t losing their mind. They are just trapped in a very dark place. There is hope and help for those suffering with chronic pain syndrome. My book tells them about lifestyle changes they can make to get control of the pain and advanced medical treatments that are available. They can control the pain and get their life back, instead of letting the pain control them, but they need help doing this.
3.) What is chronic pain and what causes it?
Good question. Chronic Pain Syndrome is when pain lasts a long time, over six months, and is not relieved by standard medical treatments. Chronic pain doesn’t discriminate, young and old may get it. It can result from a previous injury long since healed. Or it may have an ongoing cause such as arthritis, cancer, nerve damage or chronic infections, many things. Many times doctors don’t know why you have it, just that you do. That’s why it’s so hard to be diagnosed. With chronic pain, normal lifestyles can be restricted or even impossible without help from a team of doctors.
4.) How common is chronic pain?
Pain is recognized as a major public health problem. In the United States, it is estimated that chronic pain affects fifteen to thirty-three percent of the US population, or as many as eighty-six million people. In fact, chronic pain disables more people than cancer or heart disease and costs the American people more than both combined. Pain costs an estimated $70 billion a year in medical costs, lost working days, and workers’ compensation. One out of three people will experience chronic pain.
5.) Why do so many people suffer with chronic pain?
They are unaware there are a variety of treatment options that can help them live more normal lives. If you have chronic pain, you should seek out information about various treatment options. Because there are many new ways to treat pain, it is important that you speak openly with your doctor or with a doctor who specializes in treating chronic pain—a pain specialist.
6.) Why don’t people get treatment for chronic pain?
Many folks just don’t know where to go and their doctor doesn’t know what to do for them. Also, many people don’t seek pain relief because they are frightened of:
A.) Being labeled as a “bad patient.” Those patients won’t find relief if they don’t talk with their doctor about the pain they’re feeling.
B.) Another fear is that increased pain may mean the disease has worsened. The patient has to remember that regardless of the state of their disease, the right treatment for pain may improve daily life for you and your family.
C.) And I think the main reason is lack of awareness about pain therapy options. People just don’t know that there is help for them. Be honest about how your pain feels and how it affects your life. Ask your doctor about the pain therapy options available to you. Often if one therapy isn’t effectively controlling your pain, another therapy can. If your family doctor doesn’t have the answers, have him refer you to a chronic pain specialist in your area.
5.) Describe some of the lifestyle changes you discuss in your book that people suffering with chronic pain can make to improve their lives.
Organization, pacing and energy conservation, just to name a few. By organization I mean keeping things together to make your life easier. For instance in your kitchen, have your spices near your stove so you don’t have to walk across the kitchen every time you want to use them. And your laundry detergent, have it stored near your washer. Or for instance, say you keep your blow dryer under the sink. Every time you use it, you have to strain your back to reach under the sink to get it. Small things like that can add up in a day for a person who is in pain.
7.) What about pacing and energy conservation?
Learning to pace your self is key. I warn you it isn’t as easy as it sounds. Most of us who have chronic pain have perfectionist personalities. We have a tendency to push, push, push until the work is done. A valuable lesson is to imagine a day when you were pain free. What did you do ? I’m sure, like most of us, you did a lot more than you do at this time. Okay, now what do you do? Your day starts out good and your pain is bearable. Your family is happy to see you feeling better. You make a list of things to do, laundry, clean house, grocery shopping etc. and before the kids get home from school your body is shot. You’re in terrible pain and you wonder why. Well, what you did was the same old habit of push, push, push. Next time, stop before the pain increases and you will have more energy at the end of the day to spend some quality time with your family.
8.) Of all the techniques you talk about in Living Well with Chronic Pain, what has been the most important to you?
Learning how to manage my stress. When I discovered I could control the level of pain I’m feeling by controlling my stress, it was a miracle.
9.) How can you do that? Stress is everywhere. We all have stress.
Yes, we do. And that’s a whole book in itself, but let me give you an example of what I’m talking about. Say you’re driving on the interstate and some driver cuts you off in traffic. Almost causes you to be in an accident. Well, immediately you become angry. Your stress level increases. As you drive down the road you’re still thinking about the jerk and internally your stress is causing your more pain. You get home or work and it’s still on your mind. Your pain level has increased to an almost unbearable point. You end up taking pain pills and you’re ruined for the day.
What you have to do is stop the stress. It’s a mind over matter thing. Have your moment of anger and move on. Let it go. That person sure isn’t thinking about you or what he almost did. He’s gone on his merry way, probably not even aware of what he did, not a care in the world. You have to learn to stop the stress in its tracks before your pain increases. Remember, stress causes anger and anger increases your pain. It’s that simple. Stress = Anger = Pain. You can practice this exercise in any stressful situation. You’ll see it really works. H owever, don’t expect to master this overnight. It takes time. The main thing is to be aware of what you are doing to your body with your mind.
Wow, that gives us all something to think about.
Yes, we’re bombarded with all sorts of stress caused from ourselves, family and friends. At all times, it’s especially important to think about pacing ourselves and what we are doing. It’s okay to take breaks when you are shopping or dealing with your family. The person with chronic pain has to always be aware of what they are doing to themselves.
10.) Interesting, Jude. Okay, now we’re learning to control the pain. What if it gets to the point where that’s impossible. Then what?
That’s when you need to go a step further and, with the help of your pain management specialist, check out other pain treatments, such as Medtronic Advanced Pain Therapies.
11.) What are Medtronic Advanced Pain Therapies?
Advanced Pain Therapies are proven, effective alternatives to back surgery, drugs or other therapies. Advanced Pain Therapy Neurostimulation and Intrathecal works directly on the spinal cord—the highway for pain signals—and is thought to work by interfering with pain signals before they reach the brain. To me, Medtronic has been my lifesaver. They are a world leader in medical technology, pioneering pain therapies which restore health, extend life and alleviate pain. I have a Medtronic Itrell Three spinal cord implant using Medtronic Advanced Pain Therapy Neurostimulation, the same kind of pain therapy as Jerry Lewis, the famous actor.
Oh, my goodness, I’ve never heard of such a thing. Does it hurt? Tell us your story.
No, it doesn’t hurt at all. It started out with a low backache that never went away. Within six months I was unable to walk without assistance and was quickly losing my independence. I was diagnosed with Arachnoiditis, clumping of the nerveroots, an incurable progressive disease of the spinal cord causing a symptom called chronic pain syndrome. Excruciating pain up and down my hips and legs. I thought my life was over. I was scared to death.
I went through the pain treatment center and learned to live with the pain until it was time to take the next step. The technology created by Medtronic and the skill of my Neurosurgeon, Dr. Michael Brown, literally saved my life. Today, I’m drug free and nobody knows I have chronic pain unless I tell them.
How does it work? I t sounds like a miracle.
Believe me, it is a miracle. I have a small chip implanted into my hip. A lead wire runs from my hip up my spine. From that lead, four smaller wires go into my central nervous system. Today, when my pain increases, I feel electrical pulsates in place of pain. I have control of the pulsates with a small hand held monitor. I can increase it or decrease what I’m feeling or completely turn it off. This is it. My friends tell me it kind of looks like a garage door opener, but it’s a miracle in disguise.
Just the thought of wires in my spine gives me chills. Can you feel it?
Anytime you place something foreign in your body you feel it. When I first had the surgery, the next day it felt like the transatlantic cable, but now I’m aware it’s there, but don’t really feel it. Believe me, whatever discomfort I may have had at first is well worth the benefits I’ve received. Thousands of people with chronic pain or cancer don’t get enough pain relief, have uncomfortable side effects, or experience complications from oral medications or repeated surgeries. Medtronic Advanced Pain Therapies provide additional options for these people. Advanced pain therapies are proven, effective alternatives to back surgery, drugs or other therapies.
12.) What is the Intrathecal Advanced Pain Therapy?
Advanced Pain Therapy Intrathecal is used a lot for cancer patients as well as others. I have success stories from both Advanced Pain Therapy Neurostimulation and Intrathecal patients in Living Well with Chronic Pain. Intrathecal uses a small pump that is surgically placed under the skin of the abdomen to deliver morphine directly to the Intrathecal space, the fluid around the spinal cord. The medication is delivered through a small tube called a catheter that is also surgically placed.
The spinal cord is like a highway for pain signals on the way to the brain, where the feeling of pain is experienced by your body. Because the drug is delivered right to the spinal cord, where pain signals travel, pain can often be dramatically controlled with a tiny fraction of the dose that would be required with pills. T his helps minimize side effects.
Is this new?
No, it isn’t new. It has helped thousands of patients worldwide since its beginnings in the early 1970’s. Medtronic, the first company to provide Neurostimulation systems, continues to apply new medical technology to refine the systems.
13.) Jude, your book sounds like it would be very helpful to those suffering with chronic pain.
I’m getting great feedback from my readers. I’d like to read you a short email I received from someone living with chronic pain for many years:
“You don’t know, on second thought of course you do, how good it feels to meet someone who has been where I am today. I would say that I am perhaps as close to ‘ending it’ as you can be, after 18 years of chronic pain, the last ten being the hardest. So it was truly wonderful to read your story. Just to hear that you got off all drugs and your life got better again has given me such hope. Thank you for writing this book. I took it home the day I bought it, and finished it by the following evening. Again, thank you.” — Jeannie Stephens
In Living Well With Chronic Pain, I discuss the Advanced Pain Therapies thoroughly. I have a chapter dedicated to frequently asked questions on the subject and information listed as to where they can go for help. Jeannie is being tested to see if Medtronic Advanced Pain Therapies will work for her. I’m so happy she’s finally getting the help she needs.
14.) You’ve really been able to help someone. Now, that’s exciting. I hope you are able to help thousands of people.
Yes, that’s my goal. To get the word out to people suffering with chronic pain that they are not alone and that there is hope and help for them.
Jude, our time is about up. Is there a message you’d like to leave with our viewers?
Don’t give up! No matter what life throws at you, where there’s a will there’s a way. I’ve taken my life back from chronic pain and if I can do it so can you. Bless you on your journey.
15.) Jude, thank you for joining us today. Where can our viewers get a copy ofLiving Well with Chronic Pain?
You may get a copy of my book at B. Dalton bookstore at the Southglen Mall, the Tattered Cover in Denver, Beth Anne’s Book Corner in Colorado Springs, or call my publisher at 303-794-8888. That’s 303-794-8888. For those folks who live out of town. they may order a copy from BooksToBeliveveIn.com, BarnesandNoble.com, Amazon.com or go to a virtual signing for an autographed copy on my website at www.judewillhoff.net.
Jude, it’s been a pleasure having you with us today. I think your book will help a lot of people. Would you consider coming back to visit us again to let us know how it’s going?
Yes, of course. I’d love to. Thank you for having me on your show.