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Sept. 7, 2021

Barby Ingle- From Wheels to Heals

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Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var, 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.

Barby knows grief from the loss of loved ones in her life as well, both her parents, and her grandparents have passed on.

Barby was living her dream. She trained and performed cheerleading, dance, and gymnastics starting at age 4 through college. Straight out of college. Barby started a cheer/dance training company. A year later she was hired by Washington State University as the head spirit program coach.

Barby has been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, she developed Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body and needs to be treated early so that disability does not take over and TMJ. Barby lost her physical abilities was bedbound for years.  Barby used a wheelchair to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment.

As she searches for a cure, she has become her own best advocate and work sharing the information so that others do not have the same life struggles that I have. Even after seeing over 100 healthcare professionals, having major surgeries she didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – Barby did not give up or give in!

In this interview, Barby teaches how we can also become our own best advocates.

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.

ℹ️  https://www.barbyingle

Discover a unique online space dedicated to individuals navigating the complexities of grief. Our community offers a peaceful, supportive environment free from the distractions and negativity often found on places like Facebook. Connect with others who understand your journey and find solace in shared experiences.

https://grief2growth.com/community

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I've been studying Near Death Experiences for many years now. I am 100% convinced they are real. In this short, free ebook, I not only explain why I believe NDEs are real, I share some of the universal secrets brought back by people who have had them.

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Transcript
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Close your eyes and imagine what are the things in life that causes the greatest pain, the things that bring us grief, or challenges, challenges designed to help us grow to ultimately become what we were always meant to be.

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We feel like we've been buried, but what if, like a seed we've been planted and having been planted, to grow to become a mighty tree.

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Now, open your eyes. Open your eyes to this way of viewing life. Come with me as we explore your true, infinite, eternal nature. This is grief to growth.

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And I am your host, Brian Smith.

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Hey everybody, this is Brian back with another episode of grief to growth and today I've got with me Barbie angle. I'm going to read Barbie's bio and then we're going to have a conversation like we always do.

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Barbie, she's a best selling author, a reality personality.

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She lives with multiple rare and chronic diseases. And I'm going to try to get these right.

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reflex sympathetic dystrophy microlab see powerbar tuvar endometriosis and other pain disorders. Barbie is a chronic pain educator. She's a patient advocate, and she's president of the International pain foundation. She's also a motivational speaker and she's a best selling author on pain topics. Barbie was living a dream she trained to perform cheerleading, dance and gymnastics starting at age four through college. straight out of college she started her own cheer dance training company.

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And a year later she was hired by Washington State University as the head spirit program coach. She has been battling chronic pain since 1977. First with endometriosis, which resulted in a sympathetic dystrophy in a progressive neuron autoimmune condition that affects multiple systems in her body and needs to be treated early. So the disability is not take over. She lost her physical abilities, it was bed bound for years, using a wheelchair to get out of bed. It took her three years to get a proper diagnosis, and another four years to get the proper treatment. So Barbie knows firsthand how hard it is to continue looking for relief for perfect dancers and then coming up against healthcare professionals who blow you off or don't believe what you're saying. Could be actually what you're experiencing. So as she searched for our cure, as she's searching for a cure, she's become her own best advocate.

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And she works sharing information so that others do not have the same life struggles that she has. Even after seeing over 100 healthcare professionals having major surgery she didn't need having complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and more. Barbie never gave up or gave in. She was tested to her limits. And she realized that they're past the boundaries that she had placed in herself.

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Barbie puts it I had to become the chief of staff of my own medical team. And she says if I can do it anyone can we just need support and hope so Barbie, I thank you for being here today with greater growth.

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Thank you so much.

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I'm glad to be here and great job on on trying to pronounce those diseases. rare diseases are 7000. So you did a really good job trying to pronounce the ones that I have. I'm doing dystrophy. He said dystrophy which I kind of like this trophy better. Oh, yeah. Yeah. Yeah.

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And then, um, the the, you said, pal there calvaire or something like that. And that's da o. B is like spelled out. Okay, pe lB eristic. Short for variant and that's breast cancer. Okay.

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Okay. So specific genetic breast cancer. Okay, now, these things came on you after you were a professional chair? cheater, right? Yes. Okay. And was it all at once or tell me how this how this progress. So enemy trusses came first. And that is something that women deal with.

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It's when your uterus grows inside of your body and starts attaching to other organs into the abdomen wall. And that was an experience for me. But I got through it and past it and had undergo multiple surgeries, treatments, medications, and felt like I conquered the world.

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But in that time, I still was able to fight my way through and it didn't affect work as much as you know, it could have and and then I was like, Yes, I conquered the world. And God said No, you didn't. You're still not on the right path and starts dropping Bigger Bolder.

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So next was reflex sympathetic dystrophy. And that's the one that was the worst if I had had injuries as an athlete throughout my life, and it was always easy to overcome. RSD was definitely not easy to overcome and it actually took me from writing around In limousines and private jets, and on top of the world, living my dreams, taking life for granted to having nothing, I lost my first marriage, my house, my health finances, that I went from on top of the world food stamps and had to start over. And that was definitely something that hit me the hardest. And then secondary to that all these other things started developing like the micro lepsy, which is seizures connected to migraines, the migraines are connected to the reflex sympathetic dystrophy.

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And so that kind of just spiraled, the other things came after RSD really triggered my body to attack itself. So everything I was facing, in my genes and in lifestyle and environment, started attacking.

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Yeah, so I can, I can't even imagine what that must have been like to have one really bad thing and feel like you've gotten over that and have these other things, you know, start coming on you. So what was it like when you started dealing with the medical community?

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When I was going through endometriosis, I never really stopped to pay attention.

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When I developed RSD, I knew I wouldn't give up the life that I had. And so I was fighting to get that back. And you know, going from doctor to doctor provider to provider, I was doing what they told me to do, I was not taking responsibility, I was putting it all on them, fix me, fix me fix me, I would go in crying, and just saying it hurts fix me. And they didn't have really anything to go on.

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Because I wasn't able to speak to them correctly. I wish that was taught to us in even elementary school, start teaching the vocabulary and things that we'll need if we do develop a chronic illness, or a loved one develops a chronic illness, because it's one in three people that are going to face something that's this dramatic and tragic like this, and we're not ready. And so I had to become my own best advocate, I had to start learning to speak the same language, I had to learn that the medical system is working as designed, which is poorly, and that our doctors are really smart. They're very educated, but most of them choose a specialty. So they don't know what 7000 rare diseases, they don't know all the diseases, so they could be a neurologist, but they might specialize in multiple sclerosis. And even though RSD you need a neurologist on your team, you have to find one that specialized in your condition, not just a neurologist, so you can get started by going to a correct doctor. But if they didn't study that specialty, that rare disease, they're still not going to be able to help you. And I didn't understand that. And so it took me 43 doctors to get to the right doctor

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43 Yeah, yeah. 100 Yeah, I have, I have friends that have some some rare conditions. And I know they talk about the frustration of trying to get the doctor to understand, to believe them, to really get to know them as a person as just seeing them as this particular disease.

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Yes, one of the things that was helpful for me, right from the beginning, this was so different in this was the burning fire pain of RSD feels like some lighter fluid on you or in your veins and caught you on fire. And you just you're consumed with putting out the fire. And it's hard to concentrate. But one of the things I started doing was taking notes every day, slept for 20 hours. I, you know, these are the things I'm experiencing.

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And after a few months, you start seeing patterns. The thing I didn't do was I didn't share for the first three years what I was keeping in my journal, so it wasn't helping the providers. It wasn't helping me. So not, don't just keep notes. But once you start seeing what helps what hurts, serve, giving that information, use those adjectives that you're putting in your journal with your medical providers. Because if I had said burning fire pain from the beginning, instead of just pain, it would have launched me in a different direction. And I think I would have gotten treatment sooner. And I think I would have gotten more correct access to care. I got over treated under treated and mistreated because I didn't have the right vocabulary.

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Yeah, that's that's an awesome, excellent point. And you talked about you know, being our own advocate and because a lot of times, we're taught the doctors know everything we're taught to to just to defer to them. Just go in as you said, say fix me and we're not taught to to try to learn ourselves and be our own advocates

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separately, and we Because of that, that is that is exactly what we're taught as children, if you don't feel good, your mom takes you to the doctor, or dad takes you to the doctor, and they give you some medicine and you go home and you start feeling better within hours, two days. And, you know, they told me after my accident that triggered the RSD, to start attacking my body. They told me I'd be better in three or four days when I went to the hospital. And here we are, later. So if they were wrong, and it took, you know, three years to get a proper diagnosis, it took another four years after that to get the right treatment for myself. And it just was a strike of fight a struggle and a challenge the whole way through.

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And I had, I grieved, I wanted my old life back so bad, it was a full on grieving process to realize all the things I had lost. And people like I married now and I have a husband who he didn't know me before, he didn't know what I lost. He just saw me for who I was now in front of him, and fell in love with me for what he saw, of who I was in, in my worst moments of my life. So in my head, I'm going through all this grief and in his head. He's like, why are you sad? Why are you depressed?

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You're you have this amazing life, you are an awesome person.

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Why can't you see that?

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Yeah, yeah, you know, grief is and grief can come from a lot of things. We think of grief, a lot of times associated with with death, and now you've had some loss in your life to also have people. But sometimes people don't understand that losing a lifestyle can be just as grievous of an event it can cause just the same types of feelings. And I really, it's interesting what you said about your current husband, because he doesn't know the loss. He doesn't know what you had before. He doesn't see that loss, right. He sees you as what you are now.

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Yeah, it's, it's incredible. If you're not going through the grief, how you can see the positives in life. And that's something that takes practice when you are in the midst of the grief. Like even I like you said, I lost a lot of people. I'm the I'm the third oldest living member of our family, there's only 14 of us left. All my grandparents and parents and everybody had passed away step parents have passed away. And that like, as as they passed away, it was sad. And I had I had that grief in that that moment. But it was something I was able to move on and move through. I've lost boyfriend's one was in high school, drinking and driving, he knew he was too drunk to drive.

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So he asked somebody else that only had two beers to drive him home. And that two beers was too much. And he had on collision with another car and killed my boyfriend. So I've had grief with losing people in my life as well. Losing my dad in 2016 was a totally different kind of grief. He was our Cornerstone in our family. He was the one who taught us that life lessons and, and made sure that that we were Okay, he's the one who got me through mentally, and, and, and helped me through the grief of losing the life that I had built for myself. And then he was gone. And that took, I mean, even just tell the lockdown until the pandemics I was still, you know, grieving, you know, for years that every time you said anything about my dad or something happened in and it was about my dad, or it reminded me of something my dad taught me I would start crying. I just burst into tears. And it's like, this is not normal to go through so much grief or is it? You know, with the other people that had passed when when my mom passed the year before a woman told me, it's okay to cry, Jesus catches your tears. And I'm like, but I'm okay. My mom's in a better place. I had that comfort. With my dad, it was just a grief in myself.

00:14:11.580 --> 00:14:39.870
Yeah. And that's, you know, grief is different for every person. And it's different for every person that we lose, because you have a different relationship with them. And I think a lot of times we expect it to be the same. But you know, it's you said even with parents with one parent, it might be one way to another parent. It might be another way. I'm wondering with all the grief you're going through with the medical things, how did that impact your grief when when people would pass away that? How did that work?

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It definitely caused me to flare, that's what we call it when the symptoms exacerbate right now, since 2009, I've been in and out of remission. So I do have to use my wheelchair some times but it's not every day. It's not i'm not stuck in bed every single day anymore but I I do have a treatment that's helpful and got me living life again. When I go through the grief, it kind of puts chemicals, not kind of it does, it puts chemicals into my body physically, that causes everything to be heightened, including my emotions. So when you're going through grief when you're going through depression, which who wouldn't be depressed if you feel like you've lost everything, or you've lost the anchor in your life or the tether, so it definitely, you go through that that chemical reaction which exacerbates the symptoms of the diseases that I live with. And so even though it wasn't something that happened to me, it was, you know, my father passing away, or my mother, my grandmother passing away, it happened to them, but I feel it physically. But I also if my husband cuts his hand, I, if I see that cut, or I see it happen, I have that physical pain, I take on his physical pain. He's like, it doesn't hurt that bad. I'm like, it's excruciating. Like, what do you mean, it doesn't hurt that bad, right. And for me, it's excruciating. And that's how my brain is processing processing the situation, even though it's not happening to me. And so it happens when when I lose somebody, it happens when I see somebody get hurt or injured. My body physically takes that on.

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Well, that's just another example of how I believe we're all one. And some people don't really realize that some people realize that on a much deeper level. And it sounds like you're one of those people that I'm the same way, if I see someone get cut, I don't feel pain. But if there's a weird feeling, I get like in my stomach, you know, it's just like, I can connect with that.

00:16:41.460 --> 00:16:58.799
And so when you said when someone passes away, it doesn't happen to me. Well, yeah, everything that happens happens to us. Right? It's, it's all from our perspective, so I can understand why you would feel that intense grief when when people you know, leave.

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Yeah. And, and I do and I think I tried to say it's not happening to me, because I'm trying to use my mental tools, skills to try to try to move through the grief right to the other side. So I try to reframe the, that happened to them. So I still have, I'm still here on Earth, I'm in this room, I still have to do the things that I need to do to live this life to the fullest until it is my time to go on to heaven. So I tried to separate it. Yeah, a little bit to help protect myself. No, I keep moving forward.

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Yeah, I understand.

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We do have to have a certain amount of separation. And, you know, it's, it's reminds me of, you know, having children, like with my daughter, you know, anything that happens to her, I feel like I feel it worse than she does, but I can't control her life. So there's this, this this thing we have to do with ourselves, I have to say, Okay, well, that's her life. You know, I can't control that. But still it hurts.

00:18:02.490 --> 00:18:06.359
Yes. Yeah, it's okay. That it hurts. Right?

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Right. It's something that that it's part of being human. And I believe we are connected in one of my experiences, I had a near death experience, my lung collapse, and it was laying on my heart is causing cardiac arrest that emergency surgery.

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In that process, my life flashed before me as if I was on my way to heaven. And I woke up in a hospital room thinking heavens not as pretty as I thought it was going to be. Really, yes.

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And, and but I was actually still here on Earth. But I my life flashed before me. And what I learned was let go of the stress, like golf, the small stuff, that the thing that matters most here on earth is human connection. And the person that like you didn't even think for two seconds about, you might have changed their life by smiling at them, or holding a door for them or asking if they're okay. Like that two second interaction that you hear on earth in this room, we feel like it doesn't matter. That human connection, that networking that we're building matters the most that is what matters. And even if it's for two seconds, or or your whole lifetime, somebody in your life it all matters. Yes. And, and all the stuff that I stressed about Dad, how am I going to eat? I don't even I don't even have any money anymore. Barbie, God will provide you You just have to trust and believe and, and, you know, it's he was right. I never went a day starving. There was always a resource or something when I need it. That comes into my life. And it's because of the networking connections in the focus on human connection versus on things and people I rather have the life experience now.

00:19:54.359 --> 00:20:02.789
Then an item or something that value, I would rather have time with a person.

00:20:03.599 --> 00:20:10.859
Yeah. So, um, earlier, we talked about engine, endometriosis, and you felt like you kind of got through that.

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And then you got hit with this other thing you mentioned, like God threw something into your life. So what is what are your feelings about why these things have happened to you?

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Well, I think that we have a life plan and things happen to us to help us fulfill our purpose. So we can't always see it at the time. But when you look back, you can say, if that didn't happen, I wouldn't be where I am today. And I've I've literally helped save lives, like having patients trying to commit suicide run into the street, and we're physically right there, to stop them, help them and continue to get them help. That I wouldn't have been there in that moment, that person would, would have still had the pain that they have in the grief that they have and what they were going through.

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But I wouldn't have been there to help them and I was supposed to be. So what I've been through is to help me help other people.

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And that is my purpose here on earth. And and I was taking life for granted. When I got sick with rst. I literally wasn't thinking about life, I was thinking about me, and where am I going to shine and what am I going to do? And now I live more abundantly, not thinking about Oh, what can I get out of this?

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But Where am I supposed to be let me stop and think let me stop and process. But God was giving me signals and he was like he gave me an Dimitrios is and not to be mean or harsh or, or put a wrath on me. Good things happen to bad people and bad things happen to good people. I don't think it has anything to do with that. And I wasn't doing bad things like I wasn't killing or murdering or, or hurting people. I just wasn't living my life for my purpose.

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And so he was saying, here's the sun, here's the sign, here's the sign. And I was ignoring him.

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And then he said, here's a boulder. Yeah, and, and it got me to stop and focus on the things that I was here on earth to focus on. So I stopped wasting time. And time went from being a 24 hour day to living life to your fullest and each moment. And taking away the the stress and the guilt that people can put on you or that you can accept. Now when I start to feel like somebody is putting guilt on me, I will like do a physical action where I take that guilt, and I just drop it out in front of me and say that's not for me.

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That's not my guilt to bear. I it's it's, um, it's my way, again, of coping through, you know, I want to come to your birthday party. But I might only be able to, say five minutes.

00:22:51.990 --> 00:23:22.349
And that five minutes, I'm going to give you the best meat that I can give you because I wanted to be here and I wanted to be in your life. But physically, I might not be able to handle an hour long or five hour long birthday party that has all this noise and streamers and fun and dancing, I will give you what I can give you because I want to have that human connection with you. And and knowing that this is moments, instead of just a 24 hour period, what all Can you throw into it?

00:23:22.559 --> 00:23:54.509
Yeah, I am only mindful of I love what you just said there reminds me of a client that I'm working with and who's in a really deep grieving process for someone that they just lost, you know, like a month or so ago. And people are putting all these expectations on them. And I was I was working with them and said, Well, I have to go to this thing this afternoon. You know, people expected me to be there. And I was like, you need to take care of yourself. And I really liked that physical action that you that you said, I'm just going to take this, and I'm going to drop it. So like, I like that a lot.

00:23:54.509 --> 00:24:09.960
Because people will they will put things on you. And when we're in having a physical condition like you are or Warren, we're in deep grief, self care is the most important thing. And sometimes we have to set boundaries. You know, we talked about all being connected, which is one truth.

00:24:10.289 --> 00:24:20.460
But there's another truth that says we have to take care of ourselves. So we need to know where and how to set those boundaries, to say to people, I'm just going to give you what I can give you but I may not be able to give you that right now.

00:24:20.970 --> 00:25:08.309
Absolutely. And we forget, like you need to have a good balance of physical, mental and spiritual health. And if one of those things is out of balance, it will not the other parts out of balance. So you know, it really does take a toll on you in and wherever you need that self care. That's where you need to put put yourself into balance and make sure that that's okay. And you're using those tools. And for me having something actionable that I can do just I'm going to drop that right there for for you, me, whoever whoever needs to see that I'm just going to drop that you don't even have to tell the person you're doing it. You can mentally help yourself by grabbing that that grief, guilt, whatever it is, that's negative and dropping it away from you.

00:25:04.170 --> 00:25:58.859
And, and know that you don't have to go to a party, you don't have to go to any anywhere or anything. If you get to go, that's what living on this earth is. And you get to go. And if you get to give it five minutes, or you get to give it four hours, it's okay. Everybody's going to be okay. You have to take care of yourself first, just like on an airplane, you put your oxygen on First, make sure your children are okay, your immediate family, and then you help other people if you can. That's exactly how God wants us to live is, is help yourself, help your family, help your friends help the bigger network. And and you know, it's part of giving others doesn't mean taking away from what you need to do for yourself first, because you can't fully give you if you're not full.

00:25:59.279 --> 00:26:18.779
Yeah, you know, it's interesting, as you say that I was thinking about when I was a kid in Sunday school, they taught us this acronym joy, Jesus, others and you. So you're supposed to put Jesus first and then others and then yourself, which is what the Bible says, right? It's backwards. But they were they were teaching this.

00:26:15.720 --> 00:26:35.130
And unfortunately, I see a lot of people still and especially with women, because I think women are taught even more. It's all about everybody else. And we need to take care of ourselves first. Absolutely, yes. It's Jesus, you owe others. Yeah, yeah,

00:26:35.160 --> 00:27:29.640
you know, I'm so in. That's really, to me, that's what the Bible teaches us. You can't be living for Jesus, if you're not taking care of yourself. And, and so that has to come first. And then you can help other people and you will be able to do that more abundantly. Once you are in line with yourself, and and it doesn't mean that, oh, I am not feeling like I'm a 10 out of 10 for for this area of my life. So I can't help you know, you can still help other people, but you need to have a focus on your life in yourself and making sure your balance is okay. That is your number one job. And then you have that you'll have abundance, and you can help other people. And it is it is a responsibility to help other people, but not over yourself.

00:27:30.119 --> 00:27:58.470
Yeah, and I can I completely agree with you. And I look to Jesus as an example. And you know, I think of all the times that Jesus was like, disappear, right? Where is he, you know, he's off praying, he's off to and he was taking care of himself, because he was giving so much that he had the he had that sometimes takes time themselves to fill up. And so we look at the example that's that's example. And we can, we can only give if we have something to give. And if we burn ourselves out, we can't.

00:27:55.200 --> 00:28:13.380
And I, you know, you're a perfect example, because your body is so sensitive, that but it applies to all of us. If we don't take care of ourselves mentally and emotionally, it's going to eventually reflect in our body, and it's going to it's going to cause us stress, which leads to other things.

00:28:14.009 --> 00:29:16.319
Absolutely. And a lot of times doctors will say like, what else is going on in your life? What else is happening? You know, it can't just be this physical thing. And you're like, Oh, well, I stressed from this, or I took on the stress from that, or, you know, it's interesting, my father in law, he always will say things like, Oh, I gotta go help Jeff or gotta help Susie do these things. And, and I'm like, you don't got to do it, you're choosing to do it. So reframe it and put it in a positive frame, you get to go help these people and, and, hey, you hurt your shoulder, you can't, you can't be helping them. Hopefully, they can now turn around, you've helped them they can help you, because you help them through their tough time. And, but if they can't, somebody else can and but we're caregivers for him, yet he's out caregiving for other people, and we're like, you actually need to care for yourself first, which will help us not have to care for you as much not that we don't love you.

00:29:13.079 --> 00:29:42.240
We just have to have time to spend on ourselves and caregiving for ourselves as well. So there has to be a balance or you see the trickle effect in the people you're trying to help because you want to be able to help somebody so that they can help somebody it may not come back to that person's belt may not come back to you but it can go on to help somebody else. And that's the that's the network that we're all in that different people can help different people but we have to help ourselves first.

00:29:42.329 --> 00:29:59.430
Yeah. So I want to ask you so what do you think is made you so resilient? Because I you know, as I hear your stories, other people hear story. People are going, I would have given up at that point. I would be done. So what do you what gets you through this?

00:29:59.670 --> 00:30:54.059
Well Get back to grief to growth in just a few seconds. Did you know that Brian is an author and a life coach, if you're grieving or know someone who is grieving his book, grief to growth is a best selling easy to read book that might help you or someone you know, people work with Brian as a life coach to break through barriers and live their best lives. You can find out more about Brian and what he offers at WWW dot grief to growth.com www dot g ri e f, the number two gr o w th calm. If you'd like to support this podcast visit www.patreon.com slash grief to growth www.patreon.com slash g ri e f the number two gr o w th to make a financial contribution. And now back to grief to growth.

00:30:56.190 --> 00:30:59.549
I hear that a lot.

00:30:56.190 --> 00:31:45.240
And I have reflected on this a lot. And I think part of it is I was born this way. I think also part of it is lifestyle and environment. I I practiced practice they my coaches used to tell me in cheerleading, they would say practice makes perfect. And practice doesn't make perfect practice makes better. And you know when your team you're cheering on a team and and the football players are down and they're giving their all but they're losing 50 to zero. And you're still down there on the on the sidelines smiling and trying to get you know noise on a third down and get the crowd pumped up. You have to keep smiling through the diversity, adversity, everything you're facing in that moment.

00:31:46.049 --> 00:33:22.410
That that feels like it's negative. Well, really, in a football game, it doesn't matter. But for me life is is my game life is where I score my points and my life experiences are points on my board. So if I'm alive, I'm still playing this game. And it might feel at the time that I'm losing 50 to zero, but my game is not over until I move on to heaven. So I can keep going. And I can turn the game around in this quarter or two minute time period, it might be a losing time. But it's only a moment. And I have the rest of my life with with this game of life. And that I saw I think that practice made me better. But I also believe that I was born with it. But I don't think all people are born with resilience. I think it's something that you have to cultivate and grow in. And it and so I've done both. And because I practiced my talents given by God, I've done better, but I still have my moments I still break down and in in crying grief and, and cry and pain. I just learned to then give myself time to do that and get through that and then pick myself up and use the tools that I practiced and built to move on to the next thing. And sometimes you have to smile through the grief, even though it's hard.

00:33:22.710 --> 00:33:27.150
Yeah. God say life was gonna be easy. He said he was going to give us life.

00:33:27.509 --> 00:33:42.119
Yeah, you just said something there that and I reflect on a lot. And I don't have an answer yet. You know, if it's resilience, is it something that's that's inborn in us? Or is it something that we can develop? Or I think it's probably a little bit of both.

00:33:38.250 --> 00:33:49.140
But I hear so many people say well, and my daughter passed away six years ago when she was 15 years old. And people say oh, I could never live through that.

00:33:49.200 --> 00:33:51.750
And or people might look at you and say I could never do that.

00:33:51.750 --> 00:34:20.880
And I say I think that these things reveal what's already in us. I think we don't we don't get a chance to exercise. And I tell people you're stronger than you realize. Because we all a lot of us have said that we made that comment. I could never live to that. But never. But humans, we have an amazing spirit. And we'll do what we need to do. And we'll figure we'll figure out a way. But you know, but there is an option. I guess people do some people do give up so it could be a little bit of both, I guess.

00:34:21.329 --> 00:34:41.608
Absolutely. And I've lost a lot of friends to suicide due to pain. And it's hard and when when I first started losing them to suicide, it's like hard enough to lose someone to an illness or an accident. It's out of their control when they choose like I no longer can take this pain.

00:34:43.289 --> 00:35:54.329
Who am I to say I mean, I can I can pray that they're there right with God. And maybe that's their path to teach us the lesson here on earth it our medical systems broken we need to fix it. We need to come up with a cure. And we need to come up with options and treatments that are more helpful. And this could be the catalyst to do that losing that person. But it ultimately, it ultimately was their choice. And I have have chose to make a different choice. And I think part of it is, this is my purpose. Maybe they fulfilled their purpose on earth. And so they feel that and that that was how they're supposed to go, it's I won't know until I get to heaven, and all will be revealed. So I try to trust and believe that, even though they choose that, to give up, it's not a choice I would make. And it's not a choice I would put on somebody else or make for someone else. If someone said, I want to die, I would talk I would start a conference. That's a conversation starter to me. And, okay, let's talk about Do you know your purpose? Do you know what you're doing here on earth?

00:35:54.659 --> 00:36:53.608
When it's your time to go? You You will go, but you still have a purpose to fulfill? Do you feel like you fulfilled your purpose? Or do you feel like you're stuck in so now you want to give up because you're stuck or you don't like your situation? And that that's the way you're choosing to get out of it? There's other ways to get out of it. Have you thought of those? You know, have you thought through it yet. So I would try to talk somebody out of it, is because I'm so passionate about life and living life to the fullest here on Earth. But I also have lost so many friends that I can't judge them for that being their choice. It's sad, it's hard, it gives me grief. And, and, and, you know, I also have to respect and hope and pray that they were doing what was best for them and not just giving up but really knew that that was was where they wanted to go.

00:36:54.150 --> 00:37:27.960
Yeah, well, I think that's a very enlightened point of view, because suicide carries such stigma in our society, and people, you know, sometimes say that this person has given up or they were weak, because they just chose to take their lives and, and it carries stigma for the people left behind. And I personally believe that we should try as best we can not to judge another person person's path. We don't know what their path is. We don't know how that that taking of their life might impact somebody else, even in a positive way. So it's not first I don't think it's for us to say,

00:37:28.409 --> 00:38:05.880
right, and that's exactly how I feel. And but it's it I didn't start there. I started with here, right grief that these people are committing suicide was my best friend, she sent me a box. About a month before she passed away with a I mean, it was like a care package. And each, each item in the package had a sticky note on it with a little message. And I still have some of the items from that box that that have her little messages on them. But she literally she I thought she was doing okay, she got married. And the next day jumped out of the 10 storey window.

00:38:06.750 --> 00:38:08.519
The day after she got married day after

00:38:08.519 --> 00:38:39.690
she got married is like you don't understand, right? You just don't understand and and she had me to talk to she, she we had talked she had before getting married. She was in a women's shelter for being battered. You know, she lived through that. What? What what happened in that in that moment that she decided to, to this is it I'm done. This is the happiest I've ever been. I'm married and I fulfill the goal.

00:38:41.070 --> 00:39:07.920
Well, that's, that's a no, I think that's another lesson for us. Because I also hear people sometimes when someone around them chooses to take their life will start judging ourselves, I should have known. And there's a perfect example of we don't know, we never know what's going on in someone else's head. And we hear you know, someone's taking their life and oh, but they were so happy. You know? Well, we'll hear that. And it just just goes to show that we can't, we can't know what's going on in someone else's head.

00:39:08.489 --> 00:39:18.989
Right. And that's between really like we say health, medical is between you and your providers. It kind of what what's going on in your head is between you and God.

00:39:19.170 --> 00:39:19.769
Yeah.

00:39:20.070 --> 00:39:59.789
I mean, they're you if you have if you have a mental challenge to get through you, you have people tools here on Earth, including people to help you through it. But ultimately, if you choose that is this is I'm going to choose my time to go I'm going to be in charge at this moment. You know, we really don't know if there's anything that we could have done to change that person's choice except for offer tools, a listening ear, hope and faith.

00:39:52.980 --> 00:40:51.480
But, but we won't know why and i and i I've come to I've grown to understand that I won't understand all the whys until I go to heaven. And then it will all make sense and it will be answered. And so I thought of it, the growth, I think that most I learned was Patience, patience and knowing that you can't control every situation, you can't control anybody else, you are only responsible for yourself. And unless you're a parent, and then you have to be responsible for your child till they're 18. But in most parents are parents far longer, like, you know, responsibility wise, far longer than 18. But legally, that's where you have to live to. And and, you know, then you have to say, all right, it's up to God. And I don't understand I don't see the picture, but I have faith that it's the right thing.

00:40:52.260 --> 00:41:08.789
You know, that's one of the things that I've come to my my journey. You know, we were we were children were taught the Bible said, you know, that God works together all things for the good of those who love Him. I expand out even out to because it's everybody that God loves. And that's everybody.

00:41:08.789 --> 00:41:32.369
So I think I think everything even even if you don't know God, God knows you. Right? And I think I've come to the conclusion this is this is not based just on the Bible, this is based upon what near death experiencers tell us. This is based upon a lot of other things that everything is working out the way it's supposed to be no matter how it appears. So I agree with you. It's patience.

00:41:29.219 --> 00:41:43.110
And I love this quote by john lennon, he said everything will be okay in the end. And if everything's not okay, it's not the end. And that is that is the patient's you're talking about.

00:41:39.780 --> 00:41:56.099
It's like, well, this sucks. But it sucks right now. And no, it's not gonna suck forever. And I don't know what's going to come out of this. And that includes everything. As I said, even with someone who chooses to take their life. We don't know, we don't know how that fits into the big picture.

00:41:57.869 --> 00:42:02.248
Absolutely, yeah.

00:41:57.869 --> 00:42:42.869
It's hard like with with my dad, we didn't know like, four days before he passed away was his birthday, he turned 71. And my eyes, I was like, I just have this feeling like, I should push through my pain physically, to get on a plane and go. And my siblings all were like, dad's doing the best he's done in years. Don't worry, you have time. And four days later, he was gone. And I was like, I knew it. Like I knew. I knew I had the message. Go Go now. And I didn't get it. I listened to people who didn't know who.

00:42:43.528 --> 00:42:48.719
Yeah, who who said, He's fine.

00:42:43.528 --> 00:43:13.768
He's the best he's been. And it was that a gift from God for them. To be with him. Feeling like this is the best he's been in years. And they got to experience that. I fall on the gift of, he told me everything he knew before that he was supposed to teach me before he passed. What I was supposed to have out of our relationship was complete in, he was able to go without me coming.

00:43:14.969 --> 00:43:20.219
Right? Right. And then that's that I love that it's such a map, everything in life is a matter of perspective.

00:43:20.550 --> 00:43:42.570
So we can choose how we look at things, we can choose the story that we tell ourselves, you know, and there's the fact you're right, there's a fact that you weren't there when your father passed. That's, that's not changing either way. So you can look at it either, as I missed out on that opportunity, or you looking at it, that's the way it was supposed to be because he taught me everything that and both are equally true.

00:43:42.570 --> 00:43:46.469
And both are equally valid. And you can choose how you feel about that situation.

00:43:47.010 --> 00:44:10.079
Exactly. Finding finding the positive, and I am a cheerleader, like I find the positive if I'm losing. Yeah, it's that is something that is that is a talent and something that I practice, like consciously practice it so that when an unconscious thing happens, a challenge arises in my life. It's easier to get through because I've practiced.

00:44:10.650 --> 00:44:17.010
even getting through the easy times I practice getting through the hard times, I'm able to get through the hard times easier.

00:44:17.219 --> 00:44:22.949
Because I put that practice in consciously when I don't even know I need it. That skill is there.

00:44:23.489 --> 00:44:59.998
Yeah, and you use that word practice a lot. And I do too. And I love And the thing is, for me, I am I am by nature, a glass half empty person. I am I am a pessimist. I'm like, worst case scenario always pops in my head first. So I was talking with a client the other day and I was given her some advices you know, some things to do. And she said, Does this work? And I said, Yeah, it works. But it's practice. It's something that you have to work at. So it's not people could look at you and say, Oh, that's just you Barbie is I could never be that way I could I could never do that. And I'm here to tell you you can't. But it's a matter of putting in the effort.

00:44:59.998 --> 00:45:01.289
It's a daily thing.

00:45:01.800 --> 00:45:45.690
Yes. Well, I used to think I was a glass half full person. And through all of the experiences and challenges that I've faced and gone through, I realized that I'm a glass always full person. And the part you can't see is hope. Hmm. But my glass is always full. And sometimes I need more hope that I have tools and skills and resources of which is the part everybody else can see. And sometimes I don't need as much help, because I have so many resources, tools and positivity that's filling out my glass, but my glass is always full. It's just not always visible to all the people.

00:45:46.050 --> 00:45:48.449
Yes, yes. That's fantastic. Yeah.

00:45:48.809 --> 00:46:00.420
And I don't I've not really, I once I say that people go, Yeah, but yeah, glass half full, half empty. I'm always full, whatever empty.

00:46:00.480 --> 00:46:33.239
And the thing is, it's all relative. And this is human nature. You know, it's, it's actually evolutionary, we focus on the problems, because that's how that's how our brains are built. So no matter how good things are, we can always find something that's wrong. You know, it's, it's a little bit too hot in here, you know, until you know, it's 115 degrees. And then we realized it was great when it was 90. So the thing is, when you have injuries and illnesses and things, then when you're having a good day, it feels like fantastic.

00:46:34.289 --> 00:47:00.599
I so connect with that. I so connect with it. In the beginning, I was like this is the worst pain ever. 10 out of 10. And then I thought it couldn't get worse. And then things would happen, and it would get worse. And I was like, I wish I could have that old 10 back because that 10 wasn't really a 10 that I was perceiving it as a 10. But this is this is now my new normal.

00:46:56.550 --> 00:47:28.530
This is now my new 10. And that is now a two and I would definitely take that that old 10 back. It definitely puts things into perspective, as you face challenges. And as you go through challenges, and really not even it doesn't have to be a challenge. It could just be living life. It could be the best moment of your life. But then you have your this is the best moment of my life. And and then something else happens in your life. This is the best moment of my life. Yes. worse.

00:47:24.210 --> 00:47:33.480
Yeah, my niece asked me a cut my some family members have COVID.

00:47:29.250 --> 00:48:03.960
And, and two of them are struggling really bad. They're all in different states. They're all isolated. They just happened to get it. And I'm in my knee. I only have one of these. But my niece said I was talking to her on the phone trying to do mental health with her while she's seeing her her parents go through this. And she said and Barbie, what's the worst thing that's ever happened to you? And she knows she I mean, she's she's seven. But she knows some of the things I've been through.

00:48:01.650 --> 00:49:12.059
She's seen some of the things I've been through. And, and but my answer was, I haven't faced it yet. Hmm. The worst thing that's going to happen to me on this earth is when I go to heaven, which will really be the best thing that ever happens to me. But the worst thing that could happen to me, hasn't happened yet. Hmm. It was like whoa, Yo, I don't know if a seven year old can comprehend that. But that's that when she asked that was like, What came to me? That's my answer. I've been through a lot of bad things. But the worst thing hasn't happened to me. Because to me that would be not living here. But then I'll be with Jesus. And I would be like, everything is amazing. And I don't have worries and I don't have health challenges, and I don't have financial issues and and the things that we stress about in this room. I will I will be full and whole. And so it will be the best thing for for my soul. For my physical body, it will be the worst thing because because I won't be in it. Yeah, no. Well, that's happened.

00:49:12.239 --> 00:50:27.898
That to me says this, I'm going to try to put words in your mouth, I don't, I'm getting a practice where I try not to see myself as my body. So my body is something that I have as opposed to who I am. So for me, death will definitely not be the worst thing because I get to see my daughter again. And so that's just that's just a transition into another phase of life. So I don't know that we know what the worst thing and this is the thing that that again, my practice is like I'm trying not to judge things as good or bad because everything is good and bad. It depends on how you look at it. And as we as you've gone through all the things that you've gone through and as we read through your list, we're like, That's horrible. That's that sounds awful. But now you're an international pain advocate. You're a motivational speaker, you've been on a reality, you know, television show, you're doing all these things because of the, quote, worst things that have happened to you. So I wouldn't say at this point, my daughter's passing was a great thing. But I wouldn't be doing this if it hadn't been for that. So and that sense, it's a gift because I believe this is my, this is my purpose. And, and it's all temporary, I'll see her again, you know, so yeah, and

00:50:27.900 --> 00:51:16.559
for her, it will be the blink of an eye, rather than the blink of an eye for you, if this is our realm of time that we're currently experiencing. So it definitely is harder to stay here on Earth. If I wasn't saying that, my body physically that would be the worst thing is right, being this body, but my soul, my my I am, is with God and heaven, and I won't have any stress or worry or anything else. So it's like the, it literally is the greatest thing, right? And I get to be with all of the people that have already passed into heaven. And one day, we'll all you know, all the people that I love and and one around me, we'll all be together and heaven. Yeah, we have to fulfill our purpose first. And that is the greatness that of living life that God gave us.

00:51:16.590 --> 00:51:51.840
Yeah, it's it's a very, very human thing. And it's always interesting to me, because I was raised as a Christian, I was raised in a church, the Bible and everything. And when I was about 14, or 15, I was like, Well, if heaven is so great, why does anybody want to go there? And I think it's because we don't really, we don't really believe that it's real. We don't you know, we don't we we kind of do, but you know, we don't really know, I guess. And once for me, I when Shayna passed away, I started studying the afterlife, and all this other stuff. And I've learned so well that I'm like, I don't fear that anymore.

00:51:48.389 --> 00:51:58.619
In fact, I'm looking forward to it in a way, I have a purpose to fulfill. Well, I'm here, I will fulfill that purpose while I'm here, but nothing really bad can happen to me.

00:51:59.219 --> 00:52:10.349
Right? Oh, and I remember as a kid, they would be like, you're supposed to fear God. And I was like, No, like, God loves me. But why should you fear somebody who who loves you?

00:52:10.949 --> 00:52:24.329
Fear if you are doing harm to yourself or others, that's when you should hear him. But if you're living in God's light, there's no need for fear.

00:52:19.829 --> 00:53:46.318
There's you you know, we're here for a purpose and God gave us free will he gave us choice he gave us the ability to fulfill our purpose. All we have to do is take action and and back to your body as a vessel. I really wouldn't like all this UFO stuff in the last few years is coming into play. I started thinking about like, well really Earth is a UFO really my body is a UFO I like it's a tool to get me around the sun. And and I'm on Earth, which is a vehicle to get me around the sun that like where I get to live my life. But that's what a UFO is like. It's a it's a object that takes something or somebody around wherever the universe to get my body is my vessel while I'm here on Earth, but I will be with with the Almighty. Oh, I am it he is. And I and so this is just my vehicle that I'm taking right now. I will move on to my my whatever the next one looks like I don't know, I imagined it to be a bright light. And and maybe twinkling stars. I don't know. I don't know what it is. But it will be having when I get there.

00:53:46.559 --> 00:54:00.269
Yeah, yeah, exactly. So um, what getting back to the medical aspects. So what would you tell people that are either in chronic pain or have rare disorders are having difficulty getting diagnosed?

00:53:57.210 --> 00:54:01.769
What are some things that they can do? What's some advice you could give?

00:54:02.610 --> 00:54:22.409
practical advice would be learn about the condition you have, if you're not yet diagnosed, it means what your idiopathic is what they call it, they don't understand it yet. That doesn't mean it's not real or that you're not going through it. It just means that the doctors haven't figured it out yet. Keep moving forward.

00:54:17.130 --> 00:55:12.329
Learn as much as you can make a journal, create an oasis around you. And whether that be your bed bound, create that Oasis around you in bed, what tools and things can you have around you in that space. If you're able to get up and be ambulatory and live, you know, more fully in a physical capacity. Take advantage of those tools. Don't feel the guilt of someone saying oh you don't need to be in a wheelchair because they feel awkward of you riding in a wheelchair so then you stop living and subduing. Get in the wheelchair and show them that you can be more and you can do more with that tool or whatever tool is a cane or medication or surgery, whatever it is that they can help you live more life and fulfill your purpose. Take control of that, and know that there's great reason for hope.

00:55:08.670 --> 00:55:14.670
There is help. And all you have to do is reach out and seek out.

00:55:12.329 --> 00:55:14.670
It's there.

00:55:15.150 --> 00:55:31.800
That's awesome. One of the questions I had asked you for some questions before we started this, and one of the questions was, how can people save 1000s in their medical bills? So that's something that's of interest to all of us, because we all deal with this crazy medical system that you said, is working as designed.

00:55:29.460 --> 00:55:36.840
I'd like to elaborate on that also. So two questions per second was saving our medical bills and why why is our system so screwed up?

00:55:38.010 --> 00:55:52.170
So this is one of my favorite topics, medical bills, I have had over a million dollars in medical bills, and I am not in debt, I found the way to navigate the system. So this is something that you can do to help with your medical bills.

00:55:52.500 --> 00:56:08.699
First thing is if you don't have insurance, everything's negotiable. Find out what you can do, Can Can you make payments over time? Can they give you a cash price or a charity price? Can the resources in your life help you out?

00:56:09.119 --> 00:56:19.349
Everything's negotiable, if you have insurance insurance companies are designed to negotiate for you. So sometimes they work in your favor.

00:56:16.860 --> 00:57:00.570
Sometimes they don't they they do practices such as prior authorization, where they delay your care so that they save money, which I really don't and it saves one department money, but it doesn't save the other department money because you can worsen your symptoms in that moment, or time, because they're delaying your care. So it's an odd thing that they do. It's a tool they use, but it saves one department money so that departments gets a pat on the back while the other departments going how do we help this person? Yeah, but every doctor send you a bill, your insurance company will send you what they call an explanation of benefits EOB, because that's hard to say.

00:56:55.590 --> 00:58:48.960
EEO B's comm doctors will send you the bill before you they get the information back from your insurance for what your insurance negotiate for you. If you do not pay that do not feel the pressure to pay that bill immediately. Wait for your explanation of benefits. If your name is spelled incorrectly, if your date of birth is incorrect, if the codes that they're putting down for the treatments that they're giving you, or office visits they're giving you is incorrect. Any of those things, even one letter in your name, can charge can can affect what they charge you and what they negotiate for you. So check, make sure your address your information, all your data is correct on every single bill, and then pay what the insurance company says to pay. Now, if that's still too high, know that it's negotiable. You can work it out, you can pay $10 or $5 a month on that bill over time and get it paid off. Usually, if they see in good faith that you're trying to pay it down, they will negotiate or just let the rest of the bill go. And that has happened. Prior to knowing that you can do this, I would just try to pay every bill until I ran out of money. And then I didn't have money to pay my rent or, you know, do do the things I needed to do. Because I was trying to pay off these medical bills. And once you pay them, you're not going to get the money back. So make sure that you wait very ob, if he says patient responsibilities, zero on your EOB. circle it take a photocopy send it in with the bill and show the doctor that you owe zero. They stopped billing you. They just need to update their system. And they need to know that you know how to read a bill. And just because they're saying that this is the bill. That's not the bill.

00:58:48.989 --> 00:58:57.690
That's that's what they are reporting before it's negotiated on your behalf. Every single bill has to go through a negotiation process.

00:58:58.289 --> 00:59:35.489
Yeah, that's a lot of really good advice. And I could just little anecdote, my wife had knee surgery knee replacements last year. And we got we got our portion of a back and we thought it was gonna be the entire deductible. But when she called to talk to them about it, they're like, well, if you pay it all right now we'll give it was like a 40% discount for paying cash. And we're like, so we thought, Okay, this is our deductible. This is what we're responsible for. You're like, no, if you just pay it out right now we'll give you so it's a huge discount. So here's a big bill always, always at least talk to them about it. You know, I think that's great advice. And

00:59:35.519 --> 00:59:46.230
understandably, yeah. I had a bill I had my rib taken out twice the same rib.

00:59:41.070 --> 00:59:51.030
But, um, the second bill was$18,000. And that was like my largest bill at that moment.

00:59:51.150 --> 00:59:59.969
Like they trickled in but this$18,000 and I, I was, I couldn't I was like, I I'm out of money.

00:59:56.579 --> 01:00:35.969
I can't pay this. Like I bought sold everything I have, I don't, I don't have the ability to do this. And I saw on TV is when Katrina happened the hurricane back in 2005, and 2004. And I said, all these churches are donating all these money to all these families. They're not even asking if they're, if they belong to a church, or they're Christian or anything, was like, I should ask my church to see if they can help me. And even after my insurance, I still owed 18,000. And my church stepped in and showed me how to negotiate.

01:00:36.389 --> 01:00:42.929
Wow, wow. And so they, I, my$18,000, real got down to zero.

01:00:43.260 --> 01:00:55.500
Wow. Awesome. So even if if they can help you with funds, great if they can help you with negotiations, even after you think it's negotiated? The word no, is just the beginning of a negotiation?

01:00:55.619 --> 01:00:56.159
Yeah,

01:00:56.309 --> 01:00:59.878
there's always a way. Just keep searching and you'll find it.

01:01:00.210 --> 01:01:07.230
Yeah, I think that's really important. So you again, you'd mentioned earlier that the medical system is working as designed. What did you mean by that?

01:01:07.829 --> 01:02:33.778
It's working exactly as designed. It's designed to make the insurance companies and the doctors and providers lots of money. And it's designed for acute care, which means short term, you break your arm, you need stitches, you put your hand on on making dinner, it's designed to take care of those acute situations that are now they need attention. It is not designed for long term care, which is the most expensive care. So now, not only are we faced with these large build challenges and life devastation with with all the aspects of our life, but the system is not designed to take care of chronically ill people. And because of that, it's it's for instance, a veterinarian is able to take care of lots of species, and all different types of traumas. If the animal has cancer, they know how to treat it. If the animal has a punctured lung, they know how to treat it. If the animal has diabetes, they know how to treat it. But when it comes to humans, every single health professional has their specialty. So if they don't know about it, they they'll say things like, Oh, this is all that I have nothing that can help you or there's nothing that can help you. Which is really heavy.

01:02:33.960 --> 01:02:35.429
Yes, absolutely.

01:02:35.789 --> 01:03:52.679
Just because the doctor says I have nothing to help you, I have nothing else to offer you. It just means that tool or resources is not for you. But there's other providers out there that are willing to learn with you or already have the skills and knowledge to help you even though you have a chronic long term disease or condition, our system just isn't set up to communicate that or teach us how to find it. But know that there is hope and his help. And that's one of the things that I do with international pain foundation is help patients find the providers that they need for whatever condition that they're going through. It's chronic, because they those specialists exist, it says how do you find the one specialist for you, that's able to help you they are out there, sometimes it takes five phone calls, sometimes it takes 100 phone calls, you just have to keep going and most people stop as we discussed before. This is something that if a boulder is placed in front of you, there's there's a million ways to get around it, you just have to start to take action. And the people who take action, get the help and the help that they need the people who just let it stop them and paralyze them don't.

01:03:53.579 --> 01:04:08.670
And even the smallest step forward, around up over through under whatever way it takes to get around that obstacle or challenge. That's a step moving forward to be on the right path and get the help that you need.

01:04:05.639 --> 01:04:44.400
But our system is not designed for that it's not designed to teach it. The most time you get with a provider on average is is 10 to 15 minutes, right? And you don't even know how to talk to them during that 10 to 15 minutes. So they're going to lead the conversation, learn how to lead the conversation, go in with a one pager that talks that has your questions ahead of time. So you don't forget to ask your questions. Because the doctor took you want a different path because they are in a hurry to get to the next patient. So it's just it's working as designed. It's making a lot of people rich, but it's not helping give people life back in most instances.

01:04:44.579 --> 01:04:54.478
Yes. And as you were saying that I was thinking it sounds like the international pain foundation is a great resource is it only for people in pain or people with other chronic conditions can they take advantage of it?

01:04:55.110 --> 01:05:47.579
We we focus on people with chronic conditions that involve Pain, okay. But our find a provider resource, we have two different resources and you can actually not have chronic pain and still find a great provider, you just you put in whatever your condition is, or if you have an ICD code, which is medical language that takes time to learn, but you can find it on your, your Yogi's find, find those ICD codes, if you put those in, we have an app on our site that can help you you put in your private information. And it tells you the providers in your area. And you can say I'm willing to travel, if you're able to travel. It also can tell you the about about price range of every provider that treats that type of condition that you're looking at.

01:05:47.880 --> 01:05:52.139
That sounds like a great resource. So it's international pain foundation.

01:05:49.530 --> 01:05:52.559
Do you know their website offhand?

01:05:52.710 --> 01:06:11.280
Yeah, international pain.org is the website and it's under Resources, find a provider. And we have the AMA on there. But then we also have another one that's powered by amino amino health took they ama is only medical providers that are part of the AMA,

01:06:11.429 --> 01:06:11.969
right.

01:06:12.690 --> 01:06:53.099
So it's kind of like buying your way onto a list. type of situation, the amino app, you cannot buy your way into this app, they take actual data, they data mined it, and taking the patient's names off, they went through the ICD codes, the charges, the cost, what insurance companies are paying, and they put it all into this massive AI system, artificial intelligence system, the data minds it for you, and you cannot buy your way to the top of the list. It literally tells you this is what it is in these are the providers that can help you with this specific thing that you need. Medically.

01:06:53.519 --> 01:06:56.369
That sounds fantastic. I like that a lot.

01:06:56.670 --> 01:07:06.000
Yeah, I just think in particular for right now this got some sort of dystrophy i don't i don't know the particular one because there's so many of them in it.

01:07:03.090 --> 01:07:42.809
Yeah. And you know, just struggling with different doctors, because she has different conditions. And you know, just really feeling beaten up and lost and like there's nobody there that really understands or no one there to really help her. And it's and it's just one thing after another. So I want people to know about this resource that hopefully we can get people hurt because you said you have to keep moving forward that unfortunately, this help doesn't come to us. A lot of times the doctors are not going to advocate for us. We're just a number on a chart, would they there see us for 10 or 15 minutes. And you know, they they don't really, really get to know us most of the time.

01:07:43.110 --> 01:07:54.630
Most medical providers have over 2000 patients that they're caring for. Wow. Yeah. Like, how do they know your name? they don't they don't even remember you from your like I told you this last time I was here. Right?

01:07:54.690 --> 01:08:02.280
Right. You know, it's that's and they're seeing, you know, one to 2000 patients in a month.

01:07:58.349 --> 01:08:12.090
Especially er doctors, hospitalists, internist. You know, they see even more than that, yes, even your primary care doctor asked your primary care doctor, how many patients they have,

01:08:12.360 --> 01:08:29.069
now. Yeah, and a lot of primary care doctors are getting out of it. Because it's so overwhelming. I was talking to the doctor I went to for several years. And she was telling me you know how tough it is to be a primary care doctor now. So I'm not here. And I don't think you are the best doctors. They're good people trying to do what they can do.

01:08:29.069 --> 01:08:31.590
But they're, they're limited.

01:08:29.069 --> 01:08:36.060
They're, they're human. And we've been taught to put them on a pedestal and think they know everything. And they can't

01:08:36.088 --> 01:08:41.698
they're not they're not they shouldn't be on a pedestal, they should be used as a resource and a tool, right.

01:08:41.729 --> 01:09:06.599
And if that is the right tool for you, that's amazing. My primary care doctor, he went to what they call concierge medicine, and he dropped down to 600 patients and he doesn't take any extra patient like he stopped at 600. He's like, this is what I need to maintain the life that I need to to pay all my bills and take care of my family and my children. I'm going to stick with 600 patients so I can give them better care.

01:09:06.659 --> 01:09:09.869
It still sounds like a lot. But yeah, that's that's a step in the right direction.

01:09:10.349 --> 01:09:16.679
Right? It's a step in the right direction. But you got to think like a third of us need a lot of attention. Right?

01:09:16.708 --> 01:09:25.769
Most of us hardly ever go to the doctor. And then the rest are are in between. But it gives better care for the third of us that need more care.

01:09:25.798 --> 01:09:32.729
Exactly. Yeah, exactly. Well, I have to ask you, we're kind of running out of time, I could talk to you all day. But I want to ask you about your reality show what that was like.

01:09:34.289 --> 01:09:55.170
It was very interesting. It taught me that reality is not real. You see the shows here? Like how could they do that? Like is this fight real? There's a seed of truth in all of it. But then there's a producer and a writer even on reality shows that by the fifth or sixth take you're not even saying it in your own words.

01:09:52.109 --> 01:10:10.770
You're You're acting at that point. So um, so know that there is a seat of truth. In it, but then they build a story around it to make it interesting and entertaining for the viewers.

01:10:03.960 --> 01:10:16.829
But like my biggest show, I guess, audience wise was on TLC.

01:10:10.770 --> 01:11:40.979
And after the producers, they came and took over our house and put up all the cameras head, you know, someone following me telling me what to say off camera. And I'm, and by the time they left, impact up, I went through a morning of like, Can I trust my own words? Am I strong enough? Am I smart enough to get through this because the producer makes you sound so good, that writer makes you sound so good. Or whatever it is that they want you to say. And you're saying stuff that you don't even know how they're gonna edit it and make it into a storyline. Right there. It's a job and they're paying you so so know that when you're watching reality shows, watching for the entertainment value. It's even even shows like reality competitions, where they're following you around for months, sometimes know that, even that they they like will sit you in a room or you'll see them sitting in a chair with with just a bright light giving like a testimonial, right about a situation that isn't always filmed immediately. They will film that like days, weeks, months later, and work it into a storyline. So even that testimonial, that's especially where it's given to you. Yeah, to match whatever they got on film, it doesn't necessarily match the words that they need.

01:11:37.350 --> 01:11:45.960
So they have you talking in this testimonial showing something else, and it makes a whole different image of what's going on.

01:11:46.319 --> 01:11:48.270
Yeah, little little peek behind the scenes. Thanks.

01:11:48.270 --> 01:11:49.229
I appreciate that.

01:11:51.000 --> 01:12:08.369
I like doing reality because although it's not real, it gets people to connect to me that wouldn't have heard of me, right? No, my journey your story and I'm able to plant my own seeds afterwards is no contact me and say, Oh, I feel so bad for your husband.

01:12:05.159 --> 01:12:13.710
And I'm like he's taking care of Don't worry. Yeah. But you know what, how Why are we connecting?

01:12:13.739 --> 01:12:20.430
What do you need help with? What do I need help with it? We connected because obviously reached out for a reason. So tell

01:12:20.430 --> 01:12:23.729
me, give me the name of of your show or your shows?

01:12:24.600 --> 01:12:31.590
Oh, well, I'm on TLC, it was called stream time cheaters, which when we signed on, it was extreme time savers.

01:12:31.710 --> 01:13:01.710
They changed the name to be more sexy. But brainstormers was another and I did on the weather channel. The kitten Barbie show which was digital reality. We did nine seasons of that. And I was a producer on that side a little more say on that one. Oh, wow. Wow, cool. But like we're like, oh, I'm gonna go at this angle, you're gonna go with that angle and so that it makes it more interesting for the viewer.

01:12:58.079 --> 01:13:05.880
So it's not always what exactly what you believe or think. But it gets a conversation going.

01:13:05.970 --> 01:13:20.340
Yeah. Oh, but those are some of the big ones but and then I did um, our pain which was on CBS out of Las Vegas. So it was like more regional, regionally shown.

01:13:16.409 --> 01:13:47.039
But it was all about chronic pain and what chronic pain patients are facing and that was like a 10 episode series and I was on three of the episodes, things like that. So I try to work in my advocacy and my purpose in life right and being a cheerleader of hope into the reality so there's a seed of truth but I'm hoping that they will make a connection that I can make into a fruit tree later on when it's needed of knowledge. awesome awesome.

01:13:47.279 --> 01:13:57.479
Barbie. We are running out of time I like to keep these two around an hour but it's been really really great getting to know you How can people find out more about you Where can people find you?

01:13:58.350 --> 01:14:35.130
You can find me personally at Barby Ingle calm which is my name Barbie with a Y angle with an eye and and and then with the foundation you and I'm on all the social medias except for Tick Tock I don't do Tick Tock but just using my name you'll find me and then and then the international pain foundation is also on social media as well as international pain.org if you are facing a chronic illness of any kind or rare disease and you need some hope and help that's a great resource to reach out to to get you going and getting you to be able to take action in your life so you can live a better fuller life.

01:14:35.399 --> 01:14:41.520
Yeah, that sounds like great resource. I really appreciate you being on break to grow today. Have a great rest of your day.

01:14:41.819 --> 01:14:44.789
Thank you so much.

01:14:41.819 --> 01:15:00.060
Take care Brian and if all your if all your viewers really quick if they're getting something out of this like I am on your podcast, which is this. Please leave a review. Let Brian know how he's doing how much you enjoy the podcast what you're getting out of it and give him five stars because he deserves

01:15:00.658 --> 01:15:03.418
Thanks, buddy.

01:15:00.658 --> 01:15:18.689
Appreciate that ever going. So that does it for another episode of grief to growth I sure hope you enjoyed it. If you like this content, make sure you subscribe, so click on the subscribe button here, and then click on the bell to receive notifications and click on all that way you'll be notified whenever I release new content.

01:15:18.899 --> 01:15:21.149
Thanks for watching and have a great day.
Barby Ingle Profile Photo

Barby Ingle

Author / Reality Personality / President International Pain Foundation

arby 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.