Time and money mean different to different people. For Barby Ingle, living with multiple rare chronic diseases has changed the way she views these things. Instead of 24-hours, she lives in each moment. She has also learned to live more consciously when it comes to saving. In this episode, she joins Penny Zenker to share her journey with us, inspiring us to make time for our health because then we can take our time back. Barby is a chronic pain educator, patient advocate and President of the International Pain Foundation. She also shares what helped her stay positive through it all, why being mindful with her medical bills helped save money, and how you can get through painful situations. Don’t miss out on this inspiring conversation!
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Barby Ingle On Why Taking Time With Our Health Take Time And Money Back
We look at all different ways on this show that you can take back time. It’s not just the things that you’re doing. It’s how you show up and take care of yourself that can make a huge difference in taking back time, making the most of the time that you have and getting the most on by bringing your best energy. We’re going to talk about making time for your health and how that can help you to take back time. I’m super excited to have with us, Barby Ingle.
She is a bestselling author, a reality personality and lives with multiple rare chronic diseases, which sounds challenging. There’s Reflex Sympathetic Dystrophy or RSD, migralepsy, PALB2 variant breast cancer and valley fever. We’re going to let her tell us about it. Out of all of that, it sounds like she has turned that into a gift for others. She is a chronic pain educator, patient advocate and President of the International Pain Foundation. She’s also a motivational speaker like myself, a bestselling author on pain topics. Without further ado, Barby, welcome to the show.
Thank you so much for having me, Penny. I’m so glad to be here.
It sounds like you have a lot of challenges health-wise. Tell us a little bit about that and how that shapes your perspective of time.
The first one, reflex sympathetic dystrophy and a lot of the other challenges that I face such as dystonia and gastroparesis are secondary to the RSD. R stands for Reflex. Anything in your body that’s automatic goes haywire. S is Sympathetic. That’s my sympathetic nervous system. That feels like someone put lighter fluid in me. My veins catch me on fire and it’s extremely difficult to put out.As a student-athlete, whatever you put into life is what you get out of life. Click To Tweet
Dystrophy is the loss of muscle and bone but it also causes other pains. It’s considered a neuro autoimmune condition, rare disease and chronic pain disease. That burning fire pain is the hardest symptom to deal with of all of the symptoms, although none of them are pleasant. All the other things are secondary to that except genetic breast cancer. The PALB2 is a gene.
I went through a lumpectomy and they’re still monitoring me for that. The migralepsy is a seizure disorder. I have all kinds of challenges both physically and mentally. I had to find a way to get past and through these challenges so I could keep living life and be a part of a functioning society. I share those tips. I am so proud and happy to be on your show to share them with your audience.
It’s not easy when you’re feeling physical pain to be able to manage through it. I’m excited for you to share some of those tips that are going to make a difference for people. Before we do that, how has all of this shaped your relationship with time?
My relationship with time has changed. Instead of being a 24-hour a day, it has changed to living in each moment and making it the best moment it can be. Some moments last longer than other moments. It legitimately is not compared to a time clock anymore. It’s how I live, do the things I need to do and accomplish them. Is there a faster, better and easier way that takes fewer pennies?
I took something that my cheerleading coaches back in junior high school taught me. They would say, “No deposit, no return.” As a student-athlete, whatever you put into life is what you get out of life. It’s like a bank. When I became chronically ill, even that changed. I talk about energy pennies and how I want to spend my energy pennies, which is how I want to spend my time.
I don’t take a shower every day. I learned to use wet cloths that have certain scents that smell good to me and can help me with aromatherapy as well as recall better memories of better times and wash my body off without having to get into a bathtub or shower. Every piece of water is a hypodermic needle hitting me. It’s extremely painful, even not bathing as often but finding other ways to stay clean.
Using a wipe on my body takes one penny, whereas getting in and out of the shower and having this heavy wet hair and that type of thing costs me a lot more pennies, maybe 4 or 5 pennies. I only get twelve pennies a day, so I have to decide how am I going to spend my pennies to make this the best day it can be? Do I have a family or community event that I want to attend? How much is that going to take out of me? If you’re a healthy person, you don’t even think about time and your energy pennies because they’re there and something you’re rich with. You don’t even think about it.
I talk a lot about energy management, not in terms of pain and coming to that threshold, but I think people are less conscious and aware of how they’re showing up. That’s why they’re more disconnected than ever. Maybe their motivation is low or a handful of other things. They don’t eat the right foods, so then they’re tired. We’re in a society where people are exhausted.
A lot of it is because they’re not paying attention to their energy management. They don’t have to. You’re in a position where you have to and you wouldn’t wish that on anyone. We don’t want people to get to a point where they have to because of obesity, disease or whatever it might result out of not paying attention.
I was one of those people. I never thought about life or time. I took it all for granted and then all of a sudden, I was so sick that I had none. I lost my job, house, livelihood and everything, but I was still alive. I had to find a way to get through and manage it. That was getting organized and paying attention, not just to my health but financially, it devastates you when you have a chronic disease come on. A lot of people go bankrupt trying to get through the health system because we’re not taught how to navigate the health system until you need it, which is a lot of times too late. All of a sudden, you have all these bills piling up.
I have had over $1 million in medical bills and I am on disability. I am not rich financially, but I also am debt-free. I found a way to balance it, get through it, do it differently and still have all of my needs covered. There was a time in there that I had to learn all those skills. Learning it through shows like this can make a difference in somebody’s life because we’re planting those seeds that can give them the life they need when they need it.
Looking back, you might not have known that it was a strategy then, but what was the strategy that you used when all of this was coming down? What helped you to stay positive or purposeful in that time?
There were a few things. It’s practicing being positive. Even if your team is winning 50 to 0, you still have to keep smiling and going as a cheerleader. I changed it. From being on the football team, I’m cheering for my life and what’s going on in my life. I’m cheering myself on. Team Barby. I got organized. The organization is my superpower. I organized my bills, created spreadsheets, highlighted them and put them into three-ring binders like, “These are paid. These still need to be paid. I’m working on this.”
It’s communicating with the billing departments at the hospitals and the doctor’s offices saying, “I only have this much money a month. This is what I can pay.” Working out deals with them where I could negotiate my bills down that apply for charity case situations to negotiate the bills. In the cases where they wouldn’t negotiate with me yet, I paid them what I could, which was typically from $5 to $10 a month. They saw the consistency.
After a certain amount of time, 6 months to 1 year and 2 years, they said, “She’s paying every single month as she said she would. Let’s negotiate with her.” They knew that it was a struggle for me. I was able to negotiate and communicate with them, not just about the health challenges with the health team but also communicating with the billing departments and those people with my insurance companies to say, “Insurance company, did you know that 8 out of 10 medical bills have a mistake?” That’s huge. That’s according to JCAHO.
When I learned that, I went back and looked at my medical bills and found that 8 out of 10 of my bills had a mistake on them. Every insurance company pays a different amount towards the bill depending on if your name, date of birth and subscriber information is put correctly. All of that matters. If you’re not getting and paying attention to them, you’re paying more than you should on your medical bills in the first place.
When you spot those errors, you communicate and let the billing people know, just like if you find an error in your health records, you can save tens of thousands of dollars as a chronic patient if you pay attention to your medical bills. When the insurance negotiates a patient’s responsibility, that’s the responsibility and that can still even be negotiated. No is the beginning of a negotiation.
I didn’t think that you could negotiate your medical bills. It’s the fact that you pushed. My mom always taught me, “You don’t get if you don’t ask.” We make a lot of assumptions that limit us, hold us down and don’t need to be there. You negotiated, found a way through and kept persevering in that.
Keeping track of what I was doing was so important. If you are reading and have a chronic illness, that takes a lot more energy upfront. Over time, if you automatically do it as the bills come in or get to each bill as it comes to you, you can save money, which you can use towards other treatments and things that you need for your future.
Do you recommend a checklist or something like that? Structure helps people to stay on target. Should you go through a checklist with each of your bills to make sure? What do you compare it against?
Your doctor typically sends the bill to you before the insurance sends the explanation of benefits. Do not pay the doctor’s bill until you get your explanation of benefits from your insurance company. Number one, the doctor’s office sends you the bill before they even know what the negotiated amount will be, hoping that you will pay it. Once you pay it, they’re not going to refund you. That’s something I learned the hard way.
Wait until you get that EOB and compare the two. Make sure that your name, date of birth and all the data information are correct. If it’s a hospital situation, they are supposed to do a bundled billing. That’s what it’s called. A lot of times, the hospitals will not bundle the bill and the insurance pays less because it’s not a bundled bill. If they go back and say, “You stayed for 24 hours,” all of these things should be part of it. The room fees, blood draws, labs and those types of things.
The doctor reading your X-ray is a separate bill from the hospital bill, but the list at the hospital should be bundle-billed by day. If you look for things like that, you can say, “I noticed that this isn’t bundle billed. You need to rebuild my insurance.” Let the insurance company start the negotiation for you but look for those types of things. If any of that data doesn’t have the proper diagnostic code on that doctor bill, that’s important.
The insurance company pays different amounts based on those diagnostic codes that the doctor lists. If they list 1 diagnostic code and you have 3 diagnostic codes that should have been there, then you can say, “You need to add these other diagnostic codes so the insurance will cover these treatments.” Look for the data points and check to make sure that they match the doctor bill and EOB.
Nobody teaches us these things. I learned the hard way and that’s exactly why I share it. I don’t want anybody else to go into debt and have a situation where they feel like they can’t get the treatment they need because they can’t pay the bill when there’s a way to negotiate that and get the treatments you need sooner. Getting that access to proper and timely care is so important because, without it, your symptoms will exacerbate, your condition can spread and worsen and your life will deteriorate when you could have gotten help sooner.
What came up for me is when you were ill, you went through a lot of pain. Did you have somebody to advocate for you or pass this information to that could support you?
Yes. It was my husband for me. When I met him, I didn’t know that I had a rare disease or they wouldn’t be able to fix it because there was no cure. We learned together. In doing that, I created a team. I’m the captain of the team and my primary care doctor is my co-captain. My husband, as my caregiver, is on the team. He can help me with the billing side but he can also help me daily.
When I’m in my worst moments, he is the one that says, “I know how these treatments work. Have you tried this? Did you do that? Let’s try this thing.” He gets me that motivation that I need to know. “I didn’t try that yet. There is something that could help. Let me go try that.” He’s there and attends almost all of my medical appointments. With COVID, he hasn’t been able to go into the hospital with me when I have had hospital stays, which has been very challenging. As we move through COVID, that will get better for us.Some things take longer than we want or expect, but that doesn't mean that they can't be accomplished no matter what the situation is. Click To Tweet
All of my medical providers have to check in with my primary care doctor. If they want to try something new or a new option is coming down the pipeline, we all talk about it, but they communicate with each other so that I don’t have any over-treatment, undertreatment or lose something that I need on the treatment side.
Coming back to the pain aspect, I would love to hear 1 or 2 strategies like with the shower and finding alternative ways. Are there some other strategies that people can use? Certain types of breathing can help you through pain. I gave birth, so I do know that it helps. Give us some insight into something like that that people can do when they find themselves in painful situations.
Proper breathing and meditation can be very helpful. If you are on medication, maintain a schedule and time every day. It’s the consistency so that the medication stays in your bloodstream for the proper amount of time. You’re not going on an up and down rollercoaster with that. I switched to red cups and straws for a few different reasons. One, it’s lesser dishes. I save time and energy by not having to do a lot more dishes. I dropped a lot of plates because I have dystonia and my arms lock up. I broke a lot of cups and plates, which cost money. I switched to plastic and used them for a few days.
I also have a poor immune system. I throw them away and get a fresh cup or paper plate and do that as needed. I also created an oasis. Next to my bed is my nightstand. For those times where I’m stuck in bed, not able to get up and do a lot, I have the items that I need to function right there next to my bed, including a thermometer, a vomit bag or bucket and an oxygen saturation measuring tool. With the valley fever, I have trouble with my lungs.
I have a spirometer next to the bed and something to read that’s not necessarily a digital item like a phone that could be hard to look at if you’re going through a migraine or that type of thing but something that’s there to entertain you. There’s a cup or bottle of water and things that you need in your life to have right there with you to comfort you. I also have a heating pad.
Do your preparation when you’re feeling good or having a better moment in time. When you’re having a bad time, those things will be on your oasis that you can grab, use and have right there. Also, remind yourself. I use a lot of sticky notes and keep track of things through Excel sheets. One thing that helped me, especially in the beginning and not being properly diagnosed yet, was keeping a journal and tracking my pain levels at different times of the day. What activities I tried that day and what options I tried for pain management, seeing patterns emerge and then using those patterns to better my world around me to get through life a little bit easier.
I’m noticing the parallels with good organization, being prepared and making sure that our environment is setting us up for success. That’s every day. If you have a place to put your keys and phone, then you’re going to know where your phone and keys are. If you’re at your desk and you don’t have a glass of water or something like that, then you’re not going to drink it. If you do have one, you set yourself up with tissues or whatever you need.
I always hear the expression that strategies are cross-contextual. If it works in one area of our life, it’s likely to work in another area. For some reason, we don’t necessarily think about it and apply it. I’m noticing many of those things that help make us efficient and effective. Anything that we do also applies in this circumstance when it comes to our health.
If you have a challenge, get creative. If it’s too big of a challenge still and you’re not overcoming it, find a way to break it down into smaller parts to accomplish it and do all the things you need to get done. Also, take the guilt off of yourself. If this week is not good, then take that guilt. I will do a motion where I grab the guilt off of me, set it away from my body and say, “I’m not accepting that guilt.”
Know that sometimes, if you have a chronic illness, it will take you longer to get through something. Even if you’re healthy and going through a challenging time at work or with your family, do the same thing. Take the guilt off of yourself. Some things take longer than we want or expect, but that doesn’t mean that they can’t be accomplished no matter what the situation is.
I love the motion. It’s a brain hack. You take it, have it come out into your hand, see the shape and color and then see it on its way.
Make it into a ball and throw the ball.
Tell us where people can find out more about you and the teachings that you’re doing around this.
You can find me at BarbyIngle.com. My website is my name. If you need help with a chronic condition that involves pain, you can check out International Pain Foundation and their website is InternationalPain.org. They do education awareness, social events and access to care. They can help a lot of people in a lot of different ways.
Thank you so much for being here and sharing all that you have learned through your challenging process.
It has been my pleasure. Thank you so much, Penny. For all of the readers of the show, real quick while you’re here, I want you to go give her a five-star rating. Tell her how awesome she is and how you are loving the show. Do that for her because she is providing this awesome resource for all of us.
Thank you, Barby. Thank you all for being here because these are some valuable lessons that we get from every guest that is on our show. Everyone has their special gifts and lessons that they’re sharing with us. They’re valuable. You may not be experiencing pain or health issues, but you never know where this information can come into value.
It could be an elderly parent you end up taking care of who has some of these issues that could help. It could be a friend or colleague and hopefully not something that you need for yourself. If you did, you will remember this show and Barby. Hopefully, you’ll go and check out some of the resources that she has available on her site. Put it in a journal or somewhere where you know you can find it when you need it. Thank you all. I’ll see you in the next episode.
About Barbie Ingle
Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var breast cancer, valley fever, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation.
She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received more than 20 commendations over the years for her advocacy work.