Season 1, Episode 16
Taking Your Mind Off The Pain with Philip Robert
A conversation with Philip Robert
About This Episode
We have all experienced some sort of pain in our lives, but what would you do if you were diagnosed with a nerve disease and told you would be in physical pain for the rest of your life? In fact, pain so severe that it is ranked highest on the pain scale and there’s no known cure? Is it possible to take our mind off our pain? Perhaps shift our perception of pain? They say pain is inevitable but suffering is optional and our guest today is living proof of just that.
In this episode, I interview Philip Robert who is the founder of the Burning Limb Foundation. Their mission is to provide help for those suffering from Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy. After seeing first hand the devastation caused by this horrible disease, Philip felt the need to create a place where they can give hope to those suffering CRPS and other related illnesses to find a voice so they won’t have to fight it alone.
Philip has battled with several health issues and he will share how he is now in remission from CRPS. He is the first person I have ever met that is in remission and I can’t wait to share his experience with you.
In This Episode You Will Learn About
- What is ‘Invisible Illness’?
- Philip’s CRPS diagnosis story
- What motivated Philip to keep going every single day despite living with pain
- How to exercise when you are in pain
- Distracting your pain
- How to find hope when your world seems hopeless
- How he got into remission
- What Burning Limb Foundation is all about
- Finding the right support group
- Philip’s definition of resilience
Get in touch with Philip Robert
- Email: philip@burninglimb.com | 214.298.3354
Resources
This episode is sponsored by Specktra
Specktra is a nutraceutical company specialized in developing CBD formulas for targeted health benefits. Their formulas combine full-spectrum CBD rich hemp extract and a well-researched balance of organic essential oils, terpenes, and phytocannabinoids for maximum therapeutic relief and an incredible taste! I use their pain patches with hemp oil and other essential oils and they are great for swelling which in reduces my pain. If seeing is believing, head on over to my instagram page at @amberlylagomotivation to see the before and after pictures.
You can check their product here
Make sure to use promo code “AMBERLY15” for your discount!
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Full Transcript
This episode of True Grit and Grace is sponsored by Spectra, a nutraceutical company that exists only to free people from their pain so they can live their lives to the fullest. Spectra specializes in developing CBD formulas for targeted health benefits. Their formulas combine full spectrum CBD hemp extract as well as a researched balance of organic essential oils for maximum therapeutic relief and incredible taste. Plus, they have different formulas to fit your lifestyle, whether that's relief, recovery, tranquility, or awake. And I love the pain relief patch because I live with chronic pain every day.
I tried it for the first time
and you know what?
It totally worked.
It reduced my pain and swelling and really, I couldn't believe it. So if seeing is believing, then head on over to Amberly Lago motivation and you can see my before and after videos. Or you can just take my word for it and head on over to spectra.com again. It's spectra.com and make sure you put in the promo code amberlee15 for your 15% discount. That's spectra.coms, p E C K T R A.com promo code amberly15am, B E R L Y15. Okay, now let's get back to the show. Welcome to True Grit and Grace, a podcast designed to empower you to claim your resilience and thrive through life's challenges. I am Amberly Lago, a mindset coach, fitness expert and best selling authority. Each week, I'll dive deep with the world's brightest thought leaders and elite performers to share tangible tools and practical advice to inspire you to keep your eyes on the prize and forge ahead. So get ready to conquer your fears, heal any trauma, lead with your heart, and elevate your life with grit and grace.
Hi, and thank you so much for being here. When you don't get a miracle, you can still be a miracle, says one of my favorite empowerment speakers. His name is Vic Bojach. I think that's how you say it. Well, our guest today is living proof of miracles can happen for sure. After battling several health issues and one that's particularly near and dear to my heart called complex regional pain syndrome. He's the only person I've ever actually met that's cured from a disease that doctors say there is no cure for. In fact, this disease is ranked highest on the pain scale and causes constant chronic pain. That's why it's dubbed the suicide disease. And I know about that because I was diagnosed with it almost 10 years ago. Well, he has created the Burning Limb foundation out of his desire to see others find their way to remission with encouragement, compassion, financial resources. And he is leaving a legacy by sharing his experience, strength, and hope with others suffering from this baffling disease. Philip, Robert, welcome to the show.
Hey, thank you, Amberly. It's good to be with you.
Thank you. And I know you are working full time, Daddy, and doing this foundation, and you have carved time out to be with us. So thank you so much for being here. Now, we have a lot of listeners that may not necessarily have CRPs, but they deal with a lot of chronic pain. And I'm so anxious to get into your story because you have a lot of different health issues, and even though you're cured from CRPs, you still deal with pain on a daily basis. So can you tell us a little bit about you and your journey?
Sure. You know, regardless of the Alphabet soup of what we want to call our illnesses, you know, ultimately, whether it's CRPS or eds or pots or fibromyalgia, it's all the same. It's a chronic illness. And for each of our own stories, it's important to just own whatever it is that we have. So my personal story, specifically with CRPS began in late 2015. Maybe in the precursors were prior to that, when I had torn an ankle ligament, I happened to step on a dodgeball. So that was where it all began for me, with an ankle injury. I moved from basic injury to boot, ordered by my orthopedic surgeon instead of having surgery. And then that caused a blood clot in my left leg. And the blood clot was ultimately what triggered the CRPS for me. So, you know, I was one of those fortunate ones that had it was
caused by a blood clot because, you know, usually CRPS is caused from any kind of trauma, whether it's a break or a sprain. Mine was caused by my leg being crushed, but yours was caused by a blood clot.
And if you think about kind of the anatomy of what happens when you have a clot, you know, these clots are like cement, and when they harden, they expand. And so I had nerve root pressure, you know, essentially, which was impinging on the nerves. But I quickly developed all of those classic CRPS symptoms, you know, so for me, it's really not important how I got here. It's, you know, what happened and what it's like now. And that, to me, is really the important thing.
Yeah, well, when you say CRPS symptoms, I had all these symptoms. I didn't know what they were. But I remember being with my physical therapist at Home. And she was like, wow, the hair in this leg is growing back really thick. Thick and fast. Look at it compared to the other leg. And she goes, that's really good. And I thought, okay, that's a good thing. Well, I didn't know that. That was clearly a sign that something was wrong. Then I had a friend come over to the house, and he was like, why is one leg a different color than the other one? And I was like, well, I don't know. I didn't care. I had my leg, so I didn't care if it was a different color. I just cared that I still had my leg. And then it was when I went to a doctor and they did all kinds of tests, but it was by even looking at me that they could see something was wrong. And I know you talk a lot about invisible illness, and a lot of people don't know what invisible illness is. What is invisible illness?
Well, I think if you were to look at me, you know, kind of on any given day, I don't really show that I have, you know, some sort of a chronic pain condition. And so a lot of us, I think, are judged based on, well, you don't look. You're going through chemotherapy. You don't look like you have cancer. You don't look like you have eds, you don't look like you have crps. But you know what? You only see a very small snapshot of us when you come into contact with us. Unless you're a caregiver or a spouse.
Exactly.
Something along those lines. Significant other. And so I think also as a whole, I think as a group, I would say that we always put on a brave face. We don't want people to feel sorry for us, or we don't want people to really know how bad it is, you know? And I think we start to look at the social stigmas around any kind of debilitating chronic illness. I don't care what it is. And you start to see things like your friends and family stop inviting you to dinner or things, and you cancel on them so many times. Right. So for me, you know, really, the invisible illness is just simply, I don't show it to you a lot. And actually, I don't have a lot of pictures from when I was really struggling. I purposefully did that. Hindsight. I wish I had taken more.
And you know what? I'm the exact same way. I remember being in my wheelchair when I was home from the hospital the first time, and I was in my wheelchair, and a friend came over, she had her camera, and she kept taking pictures. And I said, delete those pictures now. I didn't want anybody to see how bad it really was. And to this day, my husband gets upset because I'm out in the world. And I do a lot. Like, I do a lot of speaking events and conferences, and I go. I love being out doing things. And then often I come home and I am wiped out. I can't hardly walk. And he gets upset because he says, look, you're out there and you're giving it all, and you come home and you're in so much pain that you can't move. He says, other people don't see that. They don't see that side of you. And a lot of people look at me and say, oh, like I'm looking at you right now. Oh, you don't look sick. You look fine to me. And there was one time I was put in the hospital and I was septic. I didn't know I was septic. I just felt like I was dying. And the doctor looked at me and he said, you don't look sick. You look really healthy. You don't look like you should be admitted to icu, but I'm about to admit you to ICU because you're dying. And so talk about wearing that brave face. For me, I didn't want anybody to know how bad it was. I felt embarrassed. I carried a lot of shame that, oh, something is wrong with me. And so I couldn't agree more. Yeah. And it does. Our pain, our illness affects more than just us. It affects our family, our friends, how we do work. It affects our whole lives. And so how long was it that you were diagnosed with CRPs that you then decided to reach out for a cure? Because for me, I was in denial for a while until it got so bad where I was like, okay, got to do something, because I think I'm going to die. How long were you diagnosed that you said, okay, I am going to go and try and find treatment for this.
Yeah, so I guess, you know, blessing the curse. The short story is really that it wasn't a long period of time, but the sequence of events progressed pretty rapidly. So I was fortunate enough with the fact that I had a general practitioner who, about a month after I had my pulmonary embolism event, I had gone back to get updated blood thinning medication. And he took a look at the way I was guarding my foot, the color of my foot, you know, that beautiful purple color. And he said, you know, I have some terrible words to Tell you and your life's never going to be the same. And that was that. You have something called. He called it reflex sympathetic dystrophy. Right. You know, the old terminology. But so that was really within 30 days of, you know, actually having the event, getting that diagnosis. And then, of course, what did I do? You know, I went to Dr. Google. I'm a research analyst by training. So doing the research, you know, was sort of the next step and obviously understanding what it is I had. And then two. What does the traditional medical community say about it? And so that started that path for me. Oh, no, here's what I have in the prognosis is not good. So that started a search. And at the same time, I had to decide, I have all of these different things going on with me as well. I've still got a torn ankle that I need surgery on. I have embolism. I've got blood clots. And then I had another diagnosis that I didn't have at the time called May Thurner syndrome. The point is that within six months. So by April or May, I kept ending up in the hospital because my pain was just so terrible. By that time, I really started to have shutdown of my gastrointestinal system that a lot of us have that when the sympathetic nervous system kind of takes over and you have no rest and digest function at all. That was really, for me. And that was in kind of late May, early June, when it became apparent that the path that I was walking down with a pain management specialist was not going to work for me. I just didn't feel like, for me, at least, spinal cord stimulator was an option. So that was when I really went, both my wife and I, down that path. Let's look at some alternatives and see what we found. And that was how we ended up finding on Facebook a video of a patient at what used to be the neurologic relief center in mountains as Sparrow Clinic.
Well, now I want to unpack a little bit about what you said, because for me, when I was diagnosed and the doctor told me, your life is never going to be the same, you need to get back in your wheelchair. You've got something very serious. I was devastated and depressed and really that took me to rock bottom where I was at a place where I didn't want to live anymore mentally. How were you when you were diagnosed with this? How did you get up and keep going every day? You've got three kids, don't you?
Yeah, I have a daughter in college, and then I have A high schooler and a middle schooler as well. But, you know, mentioned the fact that the nickname for this is the suicide disease. So really, the thing that kept me going was the fact that I wanted to check out, but I didn't know how I could leave my daughter, especially not just to mention my wife and my stepchildren. I didn't want to leave them this legacy of another suicide. My daughter's mother happened to commit suicide in 2002. So, you know, that was really, for me, one of the few things that got me going. The other thing is that I can be known as quite a bit of a workaholic, if you want to call it that. So I continue to work, work throughout my entire illness. And for me, it simply became get up out of bed one more time. In fact, working for me from home, having the capability of doing that, was a saving grace because it helped distract my brain. Whatever usefulness that still had, because the brain fog was just becoming overwhelming, it was really a good distraction for me.
I couldn't agree more. I think that for me, what got me through, first of all, was my family. My daughters are my biggest inspiration and my husband. But having a purpose is what really got me out of bed. I mean, there were days where I just was in bed, and I had a hospital bed in the living room of our house downstairs. And I would think, I don't know how I'm going to do it today. I don't know how I'm going to get up. And I would hear my daughter's voice say, mama. She was two years old. And I thought, I'm getting up. I'm going to do this. My stepmother also committed suicide. And so that was also in the back of my mind. I don't want to do that and leave so much pain behind. That's not the legacy. I know I'm meant for more. And so I think that that's huge. If you're in pain, if you can get a distraction. I think of it just as, like, when there's a little kid, like, one of my daughters would fall down and skin their knees as a kid, I would be like, oh, I'd make sure they're okay. And then distract them, oh, look at this lollipop. And it would be better take their mind off the pain. And it's kind of the same thing I do. I love being of service because it gives my pain purpose. And I think that anybody listening, if you are in any kind of pain, whether that be physical pain or emotional pain, because it is Definitely a roller coaster of ups and downs, and some days are worse than others. But if you can do something to be of service, even if you are stuck in a hospital bed, if you can start to do something like reach out to other people and have a purpose, your purpose may be that you are going to reach out to your granddaughter or maybe knit a sweater for someone, whatever that purpose may be, big or small, I think it really helps us get out of our pain and step into being something bigger and bettering ourselves. We have a similar story there and what we did. And so you mentioned, because I have heard of the place that you went to. I've had somebody. In fact, I just got back from lunch with a friend of mine who I met because through someone who had gone to the same doctor as you. And that's in Arkansas, right?
Correct, in Fayetteville, Arkansas. So very northwest Arkansas. I was just there last week for two days, as a matter of fact.
You were? Yeah. I've seen a lot about her and I know there are probably a lot of people going, okay, well, wait a minute, how did he do this? How did he get out of pain? What did you do? So you found this clinic in Arkansas.
So, you know, my wife watched in the middle of the night, and we were probably both up at the same time, and she was doing some research, and she just found sort of a testimonial video of patient zero, basically her Dr. Katinka's very first CRPS patient. So Dr. Katinka's methodology focuses on some things that we can really control, and that is specifically the vagus nerve being the wandering nerve, you want to call it that, but it really functions as sort of a secondary brain, if you also want to refer to it that way, much like our gut. So working on specifically the vagus nerve is really where the process started. And then she layers on a multitude of other, I call them arrows in her quiver, basically modalities of treatment. And that could be anything from what worked for me, which was a frequency specific microcurrent device that's developed by Dr. Carol McMaken in Oregon. She developed that, I think, to help her son in some measure. So that was a device that worked for me. So, you know, really the conjunction and integration of frequency specific microcurrent along with focus on the vagus nerve. While she's a chiropractor by training.
Yes, she's a chiropractor. And I know that a lot of people are like a chiropractor. I know when my husband first found out about her. He's like a chiropractor. How would a chiropractor know about this pain? And she's really making some waves in the CRPS community because she's like, we need to think of some different things because, you know, doctors are doing all this invasive surgery and all these things to try to fix it, and it's not working for a lot of people. But when you talk about the vagus nerve, I've had a doctor that wanted to do a vagus nerve stimulator on me, and then they would perform brain surgery, and I was like, no, I'm not going to have brain surgery for that. How does she do that? How does she stimulate that nerve?
Yeah, so she doesn't crack her back. She doesn't do traditional chiropractic adjustments, per se. One of the things that she does do is she does work on the spine alignment, because that's really where the vagus nerves comes out of the base of your skull. You really need to. Most of us are. Look, we're hunched over a tablet or a phone. So part of that is a structural thing, you know, strengthening the cervical spine to allow the interference of the vagus nerve, you know, to be alleviated. So her methodology, I can show you, she takes fingers and puts them back here. In some respects, she does another methodology where she puts her finger inside of your mouth and hits the nerve in there. Really not my place to describe exactly the function there, but after I read her book and saw some of these other different modalities, and one of them today, which is really having a lot of success, called neuromuscular re education, it is essentially a combination of Hunter Seeker to see where if we put a current through your body where those nerves are or are not communicating, and then focusing on retraining those nerves, essentially regrowing the nerves. So it combines a physical therapy component along with a Hunter Seeker communication network. And it's really been such a functional tool. That's where we're starting to see just some tremendous results. If anybody goes on Facebook and goes to the Spirochlinic website, you'll see people literally showing up in wheelchairs. We just had a young boy graduate, 11 years old. He came to the clinic in a wheelchair, and we shot video of him running out the door after his want to, say, 12 weeks. But really, it's a combination of tools that does a couple of things. One is reducing inflammation, so identifying areas in whether it's viral or bacteria that could potentially be preventing you from recovering or responding to any Kind of treatment to utilizing some of these other tools for both a physical therapy perspective as well as a neurologic perspective to get the brain working correctly and then, you know, reducing the amount of overdrive that the nervous system is in.
I have to say I've tried the spinal stimulator. I've done ketamine infusions. I've had spinal blocks, dozens of spinal blocks. I've tried a microcurrent machine, chiropractic, eastern western medicine. At one time, I was on 73 homeopathic pills along with 11 different prescription medications. I have tried just about everything. I've tried a lot of snake oil, too, a lot of stuff that this is going to cure you and it doesn't. So I think a lot of times when so many of us have tried so many things, we have had tons of procedures and taken medication and nothing works. It can be really hard emotionally because you get your hopes up and then it just comes crashing down when it doesn't work. And so I want to say, for a lot of people listening, what works for me or what works for you may not work for someone, but we have to be willing to just keep an open mind that something may work. And, you know, that's why for me, if I find that something works, I'm like, yeah, this totally works for me. The only thing that really works for me is shifting my mindset. And I had completely changed the way I eat for inflammation. I mean, I always say, because I've been in the fitness industry for 23 years now, but I really had to change the way that I ate. Like, I cut out alcohol, I don't eat a lot of processed foods. I try to eat as healthy as possible. And that has made a huge difference. And so I think I want everybody listening to really think about what are some things that you can do, not just physically, but mentally, spiritually. Because for me, it's been a whole mind body transformation to feel better. And I just think it's a miracle that these things have worked for you because there are so many people that are struggling out there wanting answers to how can I make my pain go away? And for me, I don't feel like it's just one thing. Like you're saying, for her, it's a whole treatment. It's looking at inflammation, it's looking at getting your spine right at the vagus nerve, you know, what you're eating, how you're moving. And I know a lot of people in pain. Their biggest question to me is, how do you exercise when you're in pain? Well, I know some days it's so hard to move my body and I do what I can because I know mentally it's going to make me feel better. Did you follow an exercise routine even when you were in pain?
I didn't, honestly, simply because my recovery from the surgery on my ankle really I think set back the physical nature of my ability to get around. And then it was another year before I even knew what was causing this tremendous abdominal pain that I was having and sort of some residual issues in my left foot. So even though here I am with no CRPS symptoms, I still have chronic pain issues. So for me, what I'm left with is really walking. And that's something that while I still have a tremendous amount of difficulty doing, I can for instance, walk through an airport now and not be just totally gassed at the end. I still have some residual symptoms from my pulmonary embolism. But what I would say is that it's one size fits one. The thing that breaks my heart the most. And I talked to a young lady on Saturday night who is just really, really struggling with where do I go, what do I do, what do I have? How do I fix this, this. There's just no easy answer. So I think you touched on a couple of things and that is dietary consistency I think is really, really good From a non inflammatory diet. There are simple things that we can do. For instance, I went down and got an Ancestry.com genetic profile so that what I didn't know was that I have MTHFR issues. So I don't process fully. What is that it's called. Yeah, so the gene, the snp. The SNP is called mthfr. So Mary, Tom, mth, so Harry, Frank, Robert, and that is a genetic malfunction, so to speak. And quite frankly, a lot of us that have CRPs have it. We've just never done the genetic work on it. So I think that's an underlying thing. But what I'm pointing to is the fact that if you can then say, wow, okay, I have this genetic deficiency, what will help me do better? And so you know what, as long as they take a folate supplement, my body starts to work better. Same thing with reducing inflammation. If you cut out the foods that cause your body to inflame.
Such as what?
Such as things like peppers. That would be any of the Nightshade family not eating processed foods. Sugar is a problem. It is, it is absolutely the devil. You just have to kind of pick your poison. For me, I couldn't work on the dietary thing until I put a CRPS under control because you know what, food was the only thing that kind of at that point didn't really cause me pain until the very end when I couldn't even digest it. But you know, up until that point, food was the one thing that didn't make me hurt for the most part.
And I think a lot of times people turn to food, you know, we turn to, we're trying to do anything to stuff down the pain. So a lot of us overeat or over shop or overdate or over drink. For me, I started over drinking to try to self medicate and it was a vicious circle because it helped with the pain. It really kind of numbed out that nerve pain. And then I would wake up the next day and my leg would be a balloon and my ankle would be the size of a spin. Small watermelon. I'm not exaggerating. And then I got to the point like, something's got to give. This is not helping me. Sometimes in life I think you have to go, okay, how's that working for you? And I was like, this is not working for me. Something's got to change. And that's when I got really serious on, you know, we have a choice. Are we going to be willing to do the work and put in the effort to feel better? Look, we can go to all the doctors in the world, we can go to the best doctors. But if we are not willing to believe that we're going to feel better and then do the work and willing to do the work to get better, then we're not going to get better.
Yeah, I would agree. I would add a couple of thoughts to that. One is, you know, we always have to have something that we're going towards. If you don't have hope, we don't have to have any further conversation, you know, because that is really, for me, where it begins. Secondarily, I think we all have trauma in our lives. For some people it shows. I got mommy issues and that has, you know, played into my adult life and played havoc there. For others, it could be, you know, whatever demons you want to call it. For women, it could have been, you know, sexual abuse or rape that we have these demons that we need to address. And I think the ptsd, I think that comes along with the traumatic experience of having a chronic illness think is another area. And I personally would prefer that everybody work on that part of them as well. Because I think the emotional health and the mental health aspect of Recovering from this disease is, I think, you know, one of the first and foremost steps that I personally would have done differently. And once I finished treatment, I then undertook a fairly deep dive on the emotional boot camp side. And that has really, I think, tremendously helped.
And now where did you do the deep dive to really take a look at the trauma and address some of that trauma in your life? Where did you go to get help for that?
I did something called discovery training here in Dallas. It has its roots going way back, but basically what it's about is kind of understanding the problem. I call it the uncovered discard type of mentality. And that is multiple weekends over the course of three month period. So one understanding kind of what your issues are, what are the triggers for you, and then ultimately leading down to the path of what is my mission in life. And so that was one of the things that put the Burning Limb foundation all together for me, was to find that mission. Now that I've kind of understood and addressed some of these things that were haunting me. And I continued to make the same mistakes. I was able to put it together and then therefore have something to shoot for, you know, from a long term goal and then, you know, ultimately to be able to leave a legacy.
Wow. And can I just say how much I love the fact that as a man that you are talking about going to get help emotionally? Because I think so many men especially, they are taught not to show emotion and they're taught to just suck it up and keep going and don't cry and be tough. And I love that I see this shift happening where people are starting to talk about it more and get help. And I think we're all evolving. So I love that you share that and I love that you have started the Burning Limb because there are so many people that are struggling, they can't afford medication, they can't afford treatment. Tell us more about exactly what you do with your foundation.
Yeah, I'd be happy to. It's sort of my joy. I recognize. So let me just back up that I was fortunate enough that not only did I have good employer paid insurance, but I had the means financially to go seek a non allopathic or sort of outside the box treatment and pay out of pocket. I'm grateful for that. I mean, that's just a miracle in and of itself. So one thing that you'll see is that almost across the board, anybody that I talk to, that I speak with, that I've seen, write, post anything on social media, they've got a chronic illness. They're not malingerers. Again, by and large, they would love nothing more than to be able to go to work and earn a paycheck, but they don't have that ability. What I saw was kind of in my research over the past couple of years, it was apparent to me that, you know, the frequency rate of women, and especially younger women coming down with this specific illness is, you know, they're three to four times more likely than a male to be affected by this disorder. And so kind of concurrent to that, realizing that, you know, insurance is in our traditional medical community, they look down on sort of these alternative treatment methodologies and we need to find a way to pay for them. If we can find a way to get people to treatment, then I think that it's not a socialist type of mentality, but is, hey, how can we help people who deservedly have a right to access the healthcare even when the traditional medical community or the insurance companies say that we're not going to pay for it? So that being said, there was clearly a need. My overarching goal was to essentially put a platform in place where I could go raise funds, just give flat grants to really anybody that had one key criteria and that is they have a desire to take part in their own recovery. That's really the only mandate that we have. We're a provider agnostic. So it doesn't matter to me where you go for treatment or whether you're using our grants for non traditional methodologies like stero clinic, or if you are using it to offset, say physical therapy copays, if you're going the traditional route. Right.
So how do people go about getting a grant? Because there are a lot of people. And in fact, I just went to a business conference where I had a coach there telling me, yeah, you need to sell a high ticket item. And I said, a high ticket item. I said, most of my audience are people that have chronic illness or invisible illness or chronic pain and they're on disability and they can't afford a high ticket item. And he goes, well, are you changing lives? And I said, well, yeah, like for instance, one person reached out to me and they were suicidal. But because of a post that I did, they said right before they were thinking, contemplating, my words came into their head and they didn't do it. And so that is, you know, that means the world to me. He said, well then there you go, there's your testimonial, then you need to sell high ticket items. And I was like, I'm not going to do that no, you know, I want to be able to help people because I was on disability for a while and I know how that is. I wanted to work more than anything and I tried and I would go. There was one day I was at work and I was actually bleeding. There was a blood trail on the floor because I had had surgery. And there I was on the gym floor trying to train clients. So my heart goes out to those people who try their hardest and they can't work or they haven't found the job yet that they can hold down because I believe that there is a job that they can do. It's just figuring out how to get there. So how do people go about getting a grant that really need that support, that help just to get treatment?
Yeah, really, it first starts with either a phone call or an email with me to open up the dialogue. You know, I like to have a conversation and it really is, you know, more of a personal thing with me. I try and get to know the people that we're working with. You know, we kind of map out what the Runway looks like. How much Runway do we have before? Let's say they've got an appointment at the Spiro Clinic in February.
Right.
So they have, you know, a two month Runway to start fundraising. So it just starts with that initial dialogue. From there, we can work on a couple things. So obviously there's a high demand for grants. Our typical grant is $500 to start. I envision that to be larger over time when we start to get better known and we start to get a little bit more traction on the funding side. But it's really meant to do one thing and that is to provide seed money for you in your fundraising campaign. So we ask that people again take an active of their own recovery. The second part of where the nonprofit comes into play here is that we're able to take in fundraising dollars for specific individuals. When we're talking about business owners doing a larger amount. Let's say you have to raise $30,000. You're not going to get it getting 5, 10, $15 on a GoFundMe page. Plus you don't get the tax deduction. So for those business owners or restaurant owners who hold fundraising events or are willing to chip in, you know, by establishing a platform in the form of nonprofit, they the benefit of not just giving, but then they get the tax deduction for that. And so we work very closely with, you know, with the people that we're giving our grants to to work with them on their fundraising. I Don't really do the fundraising for them. That's really up to them. But I provide the platform and I handle all the donor management. So all the thank yous, all of the aggregation of funds that have come in in their particular, you know, name and their campaign and, you know, so that's just really where it begins, is I want to understand sort of the process. You know, having been through this, I can provide a little bit of insight into what worked for me, what didn't work for me, and then share, again, my personal experience, which is ultimately all I have to share.
Yeah, and you're a saint for doing all of that. Because I know when you're in a lot of pain, it's hard to even look at the financial side of things. It's really difficult. Do you offer. Do you have any kind of support group or offer any kind of support for people who are looking to have a community or support anything like that?
We don't. Let me tell you why. I think there are a lot of other avenues to get that. You know, again, whether it is, let's say, a Facebook support group or even one of the local chapters, looking on RSDSA's website, for instance, I think they have a small list of support groups that meet in person. But, you know, I really wanted to be focused. In order for me to be focused, I can't spread myself or the people that are volunteering with me, I can't get them away from doing the work, which is ultimately raising funds. Because for me, that is the most important thing, is to be able to raise funds so that we then have at least a service that we can provide to you. We have something tangible to give you to get you started. I had far too many negative experiences while dealing with personalities, people who are in pain, they lash out and whatnot. So I really wanted us just to be focused on one thing, which is serving others to providing this platform and a pathway so that they could have a little bit of hope to say that, hey, in fact, you know, recovery is possible.
Yeah. And I think that's super smart because I always think about it like you take a magnifying glass and hold it over, you know, in the sun on a piece of paper, it can start a fire. But if you're laser focused on one spot, that's where that, you know, it's energy. When you're super focused, it's energy. Whereas you take the magnifying glass and just have the paper and you're looking around everywhere, you don't get that fire. You don't get that energy. So I think that's important. And actually, you know, there are a lot of support groups out there. And I think it's really important to find a group that is positive and uplifting and not just a place to dump. For me, that was super important. It was suggested by doctors that I get into some support groups. But I think it's really important to find the right group. What is the best way? You said people can email you or you have a beautiful website they can visit. Can you tell people where to find you?
Yeah, sure. So on the web, we are at www.burninglinn.com. that's B U R N I N G L I M B as in boy.com. i haven't switched over to my.org path yet, but that's 2020 project for me. So that would be the first place you can email me at philip p h I l I p. That's one l philipurninglimb.com or you can call me on my cell phone. 214-298-3354.
Oh, thank you. And you know what? I'll have all that information in the show notes as well. Y', all. There are not many people that would offer their phone number and their email like that. So you are truly a saint and you're helping so many people just be resilient. What is your definition of resilient?
It's a saints, you know, just don't quit. And I say don't quit before the miracle happens. For me, my miracle happened at the Sparrow Clinic in Arkansas. I would encourage anybody who is looking at alternatives to just keep an open mind. And that is definitely where it worked for me. So being resilient is just never giving up, no matter what.
I love that. Well, thank you. Thank you so much for being here, for offering to help so many and really leaving a legacy of just hope and inspiration and compassion. And you're helping so many. Thank you so much.
Well, thank you for all that you do. I think you provide such an encouragement and example to all of us in this community who, you know, struggle on a daily basis that there is and there are alternatives. And so, you know, again, I thank you for kind of leading the way.
Oh, thank you. Okay, until next time, thanks.
Okay, thank you.
Thanks so much for joining us this week on True Britain Grace Podcast. If you like it, please rate it or share it with your friends. That would help, too. If you're not yet on the newsletter list, come over to amberlylago.com and jump on it. While you're there, you can grab a free downloadable gratitude journal.
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Pain to purpose to joy.
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