Steve Collins: Living with vEDS, Health Anxiety, and Letting Go of Control

[00:00:01] Hey there, listeners. Welcome to Sh!t That Goes On In Our Heads, our podcast where we normalize conversations around mental health. That's right. I'm Dirty Skittles and alongside my amazing co-host, G-Rex, we're here to share stories and tips from our incredible guests. Each episode, we deep dive into struggles and triumphs of mental health, offering practical advice

[00:00:26] and heartfelt support because no one should feel alone in their journey. Join us as we break the stigma and build a community of understanding and compassion. Tune in and let's start talking about the shit that goes on in our heads. Three, two, one. Welcome back to another episode of Sh!t That Goes On In Our Heads. I'm here with the awesome

[00:00:51] Dirty Skittles and today we have an amazing guest. Steve, welcome to the podcast. Steve Collins- Welcome. Steve Collins- Thank you for having me. Steve Collins- Are you ready? No, I'm just kidding. Steve Collins- Are you ready? Steve Collins- No. Steve Collins- Never ready. Steve Collins- All right. Steve Collins- What are you comfortable sharing with our audience about your story? Steve Collins- You know, it's a great question. And I've been mulling over that. And I think that you folks have such an authentic and transparent

[00:01:18] podcast. This is, it's an opportunity to maybe talk about some of the things that I don't want to talk about. And so right now, let's say I'm an open book. Okay. All right. Where are you at in life now? Like, what's the hardest part of your day? Steve Collins- Ooh, you know, it's a great question. I know, honestly, as you both know, was laid off earlier in this year from an organization that I thought that I would retire at.

[00:01:43] And I was really excited about that. And having that steady income where you don't have to worry about what's next on top of everything that's kind of happened with the health struggles in the last year. So being in that place where you're building relationships and working contract work and every day is you're just hoping that next opportunity comes. It's a challenging place to be to step out of the comfort zone of working under the security of a larger organization. But so that's the hardest,

[00:02:11] but it's also the most rewarding. You know, it provides an opportunity to really, I think, just be grateful for the work that does come your way. So many people take for granted an opportunity to work with a customer or client. And I've actually found like, sort of an overly emotional response to that now to where I'm just grateful. And so it's actually a really wonderful place to be. I love that. And you mentioned, especially during like health struggles that you're going through, are you comfortable sharing what that is?

[00:02:37] Yeah, yeah, absolutely. So, so crazy story last. Well, I think I got to give some pretext because not to make this about health insurance, but organization I work for, they paid for health insurance the past six and a half years. Family never had to worry about how we, you know, insure our family. It was truly amazing. And then they made this change to where the plan was a high deductible plan was the only free one. So my, my wife and I talked, we made some investments and we're like,

[00:03:05] you know, we're healthy people. We're just going to go with the high deductible plan. Well, that was September that we made that decision. And then the day after Thanksgiving last year had this weird pain in my head then, and it wouldn't go away. And I was really kind of confused, taken aback. Maybe it's some kind of gastroenteritis. I went and laid down. My wife is a nurse lover, but she was totally like, you ate too many cranberries, dude. Now we're dog. Like there's like literally my family were telling me that I was being a little dramatic.

[00:03:33] So we had a family dinner and so she, she left without me. She was not happy that I did not go to this dinner. And I was like, you know, I'm going to go to the hospital. I mean, I've been feeling this weird thing for about eight hours now. It hasn't gotten any better. And honestly, it's our health insurance is changing in a month. Like I want to make the better financial decision for our family. And so I went to the hospital and they did a scan. They're like, it's gastroenteritis. We're going to get you home. You got something wrong with your spleen, but that's not causing

[00:04:00] your pain. And nurse came back in and I was like, I know this sounds really silly, but my insurance is changing. Is there any way we can get someone to look at this again? Well, oddly enough, they came back with a dissection of my superior mesenteric artery, which I had no clue what a dissection was. And that landed me in the hospital for 32 days with a rare genetic diagnosis of vascular Ehlers-Danlos syndrome. So crazy enough, it really had a lot to do with insurance and making financial

[00:04:28] decisions. But yeah, that's a very brief, you know, condensed version of where this started. Were you like, what is that? Or were you familiar with what it was? No, I was not. And to add some comedy to this, because I am one that deals with things inappropriately with humor. My wife sends me a screenshot and she's like, where are you? And I'm like, I'm at the hospital. She says to me, I hope they figure out what's wrong with you.

[00:04:55] Keep in mind, my wife is a nurse, right? And so I send her a screenshot and I'm like, so I have a dissection in an artery. I don't know what that means. So yeah, you know, and honestly, like as much and, you know, Gretchen G-Rex can tell you that I'm not a big fan of AI, but I was totally like, what is this? And it was like, this is not good news. And I'm thinking, I'll be out of the hospital in like three days and I'll be back to work. So no, I had no clue.

[00:05:21] I have become very proficient in and knowing more about that. But essentially what a dissection is, your artery has multiple layers and the inside layer actually gets a tear in it. And when that tear happens, blood flow actually goes between the layers of the artery, which causes what they call a pseudoaneurysm. An aneurysm is when you look at like a balloon and you blow it up, right? Or garden hose, that's an aneurysm. All layers are expanded, but a pseudoaneurysm is when blood gets trapped between the two layers. So it's actually a thinner

[00:05:50] aneurysm, right? So it's actually more dangerous, which that didn't make sense to me until much later, which is probably a good thing. And then it actually causes an occlusion of the artery, which results in blood flow reducing. And so, you know, here I am making jokes and they're like, no, you don't understand. Like if we sent you home, you probably would have died. And I'm like, oh, okay. Wow. So yeah. At any point was your wife like, did she like feel a little bad about telling you that you're

[00:06:19] being overdramatic and then finding this out? You know, I, at some point in time, I may get very emotional on this and I just want to go ahead and preface that right away. So as much as I love my wife, she's had, she's had a lot of trauma in her life. She actually, she lost her first husband when she was in her twenties. And so she had two young kids and he actually passed away of a rare cancer in December. So the feeling guilt.

[00:06:49] Yeah, absolutely. But at the same time, like this was so like triggering for her again, like, wait a minute, like what's going on that it, it took a long time. I think for that to kind of breakthrough, you know, I think one of the things that people often don't understand is, you know, I was in the hospital for a month and I'm going to say it was actually pretty easy on me because when you're in that place where you can't worry about finances, you can't worry about work, you can't worry about all these things. You're only worried about yourself.

[00:07:18] Well, me and my wife had to take care of our three kids. She had to go to work. Right. So she was, in my, my opinion, she was a true champion in that. Like it's actually often harder on those folks. And we don't often think that those folks need support, but I mean, believe it or not, that's, she was the one that needed it more than me. Yeah. She felt that. We joke about it now though, but it wasn't a good joke before.

[00:07:42] That like warms my heart hearing you say that though, like, cause it's such a selfless perspective, like to think about what she was going through. Cause I think it is, maybe I'm wrong, but I think it can be pretty easy to just completely focus on yourself with the disregard of like those around you. So to be able to have that perspective, I think is very beautiful. Like that makes me happy. So I was going to make a joke. It's okay.

[00:08:11] About the, do we think it was a downward dog that caused the dissection of the... Well, no, my mom was telling me to do downward dog. She was like, cause they were like, it's gas. Right. And like, I still have the text messages. I mean, honestly, there, there will be a day where I just make a complete joke out of this. And quite honestly, there was a journey in that too, that I'll share. You know, what I'll say about like, all I can say, that's a God thing. It's really easy. You're right. I think

[00:08:39] for us to be selfish about where we are in things and human nature is a hundred percent like, woe is me. Like I could choose to be really upset over this or angry or whatever, have it be. But you know, when there was a real evolution that happened in me in that. And I realized that sometimes those, these experiences that we go through, they're not really about us. I know that that sounds like really kind of odd. You know,

[00:09:08] I remember sitting in the hospital bed and things were just getting worse and that the doctors weren't too thrilled about the direction of things that they were going in. And I remember looking at my wife and I said, something just tells me this isn't about me. And to me, that's, that's like, that has to come from a higher place. There's no way that you can be in the middle of suffering and think that's the case, but it makes it infinitely easier to deal with. Like, cause if you're playing victim, man, that's all you can do. But when you recognize that like,

[00:09:38] Hey, when I'm going through, I can be an encouragement to others. You know, people are able to see me in this situation and expect one thing, but yet be able to receive something different. I kind of see that as a privilege and I'm grateful that I'm wired sort of predispositioned in that direction anyway. I know not everyone is. So I'm going to say, I think it was a little bit easier for me to do because you know, the doctors were coming in and I'm just like, I'm cracking jokes. You know, I remember the, the surgeon came in before, cause they had me in a local hospital and they transferred me and the surgeon came in and she's

[00:10:08] like, so we did another scan, your dissection's getting worse. You know? So what we're thinking now, instead of doing a stent, like we'd have to open you up. And so I had an ablation a couple of years ago and for AFib. And so I'm like, stent, you know, you're going through an artery. It's like asking if I want cream or my coffee. And now you're like, wait a minute, you want to open me up? That doesn't sound so good. And so in that I, you know, she's given me the list of like all the things that could possibly happen to me. And I'm like, so basically I could die. Right. She's like, well, yes. And I'm like, well, then I went out to pay

[00:10:38] my bill. Right. Like inappropriate joke at the wrong time. I got it. Let me cope. And then she was like, well, we're actually going to transfer you to university of Virginia. And then I've just bawled my eyes out. I was like, huh? I was like, I've never been in a situation before where something warranted a facility to say, we can't help you. Right. I mean, that was, yeah.

[00:11:03] It's been really scary, but like, you know, the fact that your doctors and your nurses could joke with you, right? Because for me, laughter is somewhat like my number one healer. And whenever I get into like a really tough situation or I get super nervous or I just need to get

[00:11:32] something off my head, out of my head, I laugh about it. Probably not in the most appropriate times, but you know, whatever. You either like me or you don't. But I'm thankful that your wife and your doctors and even you, like even as hard as it was, that you were able to figure out that this is kind of serious and that I need to like figure out like what I need to do. And it's scary

[00:11:58] because like you don't have all the answers. Yeah. And I think one of the things that I realized in this too, is that everybody copes in their own way. You know, some people shut down, withdraw. When you're going through something like this too, you also see the people that care about you that show up or don't. I mean, just because they don't show up doesn't mean they don't care. There's some people that just don't know how to care in that moment. And so, yeah, there was a lot

[00:12:23] of self-reflection and to be honest with you, I want to, I think this is even timely. Like, even though like I carry a health condition that honestly, the average lifespan for males between 48 to 51 years old, I'm 42, you know? So I'm thinking like, man, I'm kind of counting down my days, but I know that I could certainly double those days. Right. I mean, the only the Lord knows where my life is going to be. But in that, like, I didn't realize that health trauma is one thing,

[00:12:49] but honestly, like layoff is a trauma is a real thing too. And one of the things that I found is that in 2024, when there was a pretty significant layoff, I found myself really withdrawing and trying to control things in my life that I didn't realize. And so I went and I started a side business because I was like, I never want to be without another income. Now I was also and still teach at part-time in a community college. So I've always had multiple income streams, but I really felt this

[00:13:17] desire to just own something that like, hey, you can take my job. I still have this. And I didn't realize where I was displacing my feelings in that and with control and replacing it because in the hospital, and again, this kind of just is a God thing. Three days in the hospital, my hot water heater goes out. Right. And that's something I would normally fix myself. I wouldn't call for help. And I'm like,

[00:13:43] I can't fix this. Now the irony is that my hot water heater actually exploded last night. So we got to fix that. So thankfully that happened last night and not now, but then two weeks later, my truck battery dies. My stepdad was going to drive my truck up to see me and my battery was dead. So I had to have him fix that for me. Two weeks later in the hospital, our microwave above range goes out and I had to have someone else fix that for me. Now, if anybody knows me,

[00:14:09] like I built the room that I'm in, I built a deck, covered porch, I remodeled our house, I could do all this. But with this new condition, I can't, I really can't do anything that requires me to lift over like 40 pounds. And even that can be a bit dangerous for me. So like the entire time, like I'm thinking like, Oh, get me out of the hospital. I'm going to be out. I'm going to be working. And then it's like, no, okay, no, got to let go of this. Got to let go of this. And I didn't realize how much I was trying to control based out of losing my like other coworkers,

[00:14:38] losing their jobs a few years ago, how much that impacted me even as a survivor. And let me tell you, the more you hold onto things, the harder your life gets. I mean, it's just the reality. And so through this, I've actually been able to give up a lot of things too. And so it, like I said, it's been such a blessing. I haven't even realized it, but for folks that are going through layoffs, it's traumatic. We got to name it, right? It's hard. You got to be really careful with how you handle that because it can stick with you for a long time.

[00:15:08] Yeah. Yeah. It's the whole like loss of self and loss of community and all those things. People, you know, who've never been through a layoff have no idea how much it affects you mentally and physically. And, you know, it all kind of goes back to like, just be kind because you absolutely have zero idea what's happening with somebody. I got to thank you, by the way, because you reached out back in April when those announcements

[00:15:37] were made and you were really the first person that I had a conversation with. And it was really encouraging, you know, but this goes back to like, when we go through hard things and this is even biblical, it's an opportunity to encourage other people, right? You went through it. You were ahead of us in this. And so it really gives you an opportunity to encourage other people that are going through it at a later time. And so I'm so grateful that you were so encouraging in that process,

[00:16:06] so helpful. And thing is like, sometimes it's just a matter of reaching out, right? It's not that you have to open up a door for somebody or get them a job. It's really just coming down to caring. And that's something that you did incredibly well at a timely place. I just think it's so important because, you know, the place that we all work together, I mean, we were a family. Amen. And we really did take care of each other and both inside and outside of work.

[00:16:33] And I've been in your shoes. Thankfully, they paid me to leave. They're like, you can take me to early retirement. Here's some money. Deuces. I was like, bye. They're like, please take the money. No, I'm just kidding. I'm like, thank you. Bye-bye now. But, you know, I had my own issues with that, which, you know, ended up like burning me later on in December. But like, so you said this was a genetic condition.

[00:16:59] Is there anything in your genetics that like had you predisposed for this type of diagnosis? Yeah, you know, then that's such a great question. And I want to speak to something ahead of that, too. It's one of the reasons why the average age range and lifespan is 48 to 51 is because a lot of people go undiagnosed. So one of the big foundations that supports research and education is the Marfan Foundation.

[00:17:28] And there's another group called the VEDS movement that is vascular Ehlers-Danlos Syndrome, which it falls under the Marfan Foundation. So the thing is, a lot of people end up passing without knowing. So they're really getting diagnosed postmortem. So that's the reason why like prevention and education is so important because of that. Right. So early diagnosis is super important. So me knowing is just it's lifesaving, to be honest with you.

[00:17:57] And so, you know, I had some things over the years that kind of like were unexplained. And, you know, you just, you know, with my family, they're like, just do downward dog. You're fine. We don't know what's going on with you, you know? And so there was a little bit of validation that came out of this. So thankfully, when I got transferred to the University of Virginia, they did another scan and they're like, wait a minute, you've got this this dissection that we're concerned about, but yet you have other dissections in your body as well. And I'm like, what are you talking about? This doesn't make sense.

[00:18:25] And they're like, do you do drugs? And I'm like, kind of wish, but no. You know, do you drink? Do you smoke? High blood pressure. So none of that stuff made none of that, you know, check the box for them. So that's where they're like, we need to do genetic testing. So at some point they were like, they probably would have operated on me had I been like a typical patient. They would have waited and they probably would have operated. But with this condition, like if you've got a connective tissue disorder, when you start cutting, it could be cutting like cutting butter.

[00:18:54] So when you're trying to stitch things back, you're actually making things worse by trying to intervene. And so they're like, we need to get genetic testing before we even consider doing anything for you. And so that's when they found the mutation. And then when I got out of the hospital, they had tested my family. And so my mutation is actually de novo. So none of my family has the mutation. And what's such a blessing, I don't have children of my own. I have three wonderfully beautiful stepkids and I'm so grateful for them.

[00:19:22] But had I had children, they would have had a 50% chance of actually having this passed on to them. And so, you know, when I say everything happens for a reason, I'm like, man, I don't know if I could have carried that burden to, you know, to know that I would have to be concerned about them too. Yeah, that's crazy. That's tough. So when you were in the hospital, did anybody from those two organizations reach out to you or how did you get connected with them? Yeah, that's a great question.

[00:19:49] So this is what's so crazy. So my vascular medicine doctor, so when I was being treated at UVA, I had a vascular surgeon team and then I had a vascular medicine team. The vascular medicine team, there was a doctor named Randy Ramcharatar. And Dr. Ramcharatar is the only participating vascular Ehlers-Danlos physician in Virginia. Quite honestly, there's only about a handful on the East Coast.

[00:20:16] So the fact that I was only an hour away from someone who confidently knew my diagnosis really made things so much easier because he also had connections with the resources. So, you know, he made certain that the director, you know, was able to give me a call when I got out to get me plugged into groups and various activities. So, so yeah, it was. And because it's such a small community, there's only about six to eight thousand people in United States that have this diagnosis.

[00:20:45] They're really trying to get more information and being proactive. And so it's not like another condition where there's, you know, hundreds of thousands of people that have it. So kind of a unique group. So it makes it a lot easier, I think, to also communicate. Wow. Because I know, like, I have a friend who has Ehlers-Danlos, but she has it like in her joints. So it can like do all sorts of weird stuff with her arms.

[00:21:11] And to your point, like there's so many different flavors of it and people just don't know. And I think part of it, too, goes back to like the insurance thing. You know, so some people don't have that, haven't have good insurance. And so they can't get that type of treatment. Take me, for instance, first time in 45 years. I don't have insurance. I can't justify spending $500 a month for a $20,000 deductible.

[00:21:40] Oh, I get that. Yeah. Like, how do you justify that? So thankfully for me, you know, I do live in rural upstate New York and they do take money. You know, cash is king up here. But like, I'm happy that you actually recognized enough to get to the hospital. You know, reminding yourself that, you know, my insurance is going to change here in a couple months. I, you know, I kind of want to get this under the belt.

[00:22:05] Did you have any problems like with the insurance not wanting to pay for certain tests or like, like put you through the ringer? Because we've talked to other guests where that's happened, where they were like, we're not going to pay for this. Great. Yeah. You know, and thankfully, honestly, I didn't like the insurance company called me when I was in the hospital. And I was like, this isn't going to be a good conversation. They were like, time to go. You know? Yeah. They're like, you kind of overstayed your welcome. Yeah.

[00:22:37] But, you know, so I think there are a couple of things that played into that. You know, one, like where my dissection, and I still have the dissection, by the way, it's just stabilized. The body has a really amazing way of revasculating and healing itself. But where my dissection was, there's only about like 50 cases reported worldwide. Wow. Because it's in a very atypical area. Now, I think that with the advancements of imaging, I think we are starting to see maybe an uptick in that, which is positive. And people are starting to look for it.

[00:23:06] I mean, like why would somebody miss out on my first scan until something was challenged, right? So I think there's a bit of underdiagnosis. So I think the rarity of that, the insurance company also knew like, hey, wait a minute. If we're looking at this case, this isn't something typical. So thankfully, that wasn't a problem. You would have thought because I had like 10 CT scans in a matter of a month. You would have thought they would have come back and fussed at that. But you know what? Call me in a year, you know, when they're like, hey, you still have like this $100,000.

[00:23:36] Or other part of the bill that we refuse to pay. And then I'll just laugh. Yeah. I mean, I'm thinking like, there's one thing I'm going to take away from this. It is going to be to push for stuff because I feel like I would have been like, oh, there's nothing wrong. All right. I'm going to go home. And then the outcome would have been completely different, right? So the fact that you had the wherewithal to challenge it and say, you know what? Let's look at that again.

[00:24:04] You know, and I hate to make that part of the conversation because... So I worked in behavioral health for 10 years. And I know anxiety can certainly draw people in. And, you know, next thing you know, they're chat GPT and they're Googling and they've diagnosed something that, you know, they don't even have the physical anatomy to even have. But I mean, that stuff happens, right? And so I think the thing that I will say, like, to me that was really helpful is that I had the app, right?

[00:24:33] So when I was in the hospital, I saw my CT scan results before the doctor came in. I looked at them and I'm like, oh, they say there's something wrong with my spleen. And so I researched it. And everything that I researched said this deserves a conversation. And so when the doctor comes back in and was like, yeah, you can just follow up outpatient. I'm like, no. I mean, chat GPT, Google did suggest that maybe we should have a conversation. And I know that puts the doctor in a tough position.

[00:24:59] But, you know, it was simply, can we just look at this a little further? I mean, really, that was what it was. And it came down to that physician actually listening to me and being willing to do that. I still want to find him because I still want to thank him because he could have simply said no, right? I mean, that's certainly a possibility. But you do have to be your own advocate. And there's a fine line, right? You want to make suggestions of things. You certainly don't want to go in demanding and telling doctors, like, this is what you have or you think you have.

[00:25:29] Challenge, though, with the vascular Ehlers-Danlos community. So you mentioned EDS in general. Most people know about the hypermobility type, which they can have complicating conditions. I know that it's difficult. And for some people, it really does cause a lot of issues with them getting around. But the type that I have is vascular. So I'm not hypermobile. But what it does mean is that my organs, my arteries, they're much more prone to tearing and rupture.

[00:25:55] So what they equated is at 42, my arteries are more like an 85-year-old's, right? So you would look at me, you wouldn't think that I would have that kind of fragility in my body. So, like, if I go to the hospital, a doctor's not going to think, oh, maybe his deorta ruptured. They're not going to think that. So that's why, like, I mean, I wear a medical bracelet now, being able to advocate for myself. But even now, like, I tell people, I'm like, oh, yeah, EDS. And I'm like, no, I don't think you're listening to me. All you hear is EDS.

[00:26:24] So you think that I got, like, flexible joints. But that's not it. But, I mean, doctors have so much you have to keep track of anyway. Like, how do you stay on top of that? I don't know. I mean, that's hard. I think self-advocating is, like, huge, you know. And by having your medical bracelet on, you know, and just having that knowledge. And do you, like, keep a journal or, like, your files on your phone in case you ever end up back in the hospital for some unexpected reason? Oh, man.

[00:26:54] So, you know, my wife's a nurse. She made certain I had a little package put together when I got out. Because, honestly, that's what they recommended that I would do that, right? Because, you know, I think we often think that we're in control of our lives. And I thought I was in control of my life, too. And I went from being a healthy adult doing anything that I wanted to, you know, healthy. But I'm not, I mean, I can't do a lot of activities now, right?

[00:27:21] I mean, I haven't done a crunch in 12 months because I can't increase any kind of abdominal pressure, right? So, I mean, there are all these things that I have to be super concerned about now. And so, in that, it's that fine line between, like, where do I live and where do I not? And so, I lived in that fear, I would say, probably for the first month and a half, two months. Because you're going to love this. They were like, if anything is out of the ordinary and you feel any kind of, like, weird pain, you should call us.

[00:27:50] And I'm like, that's not the answer you want to give me. And so, what I finally had to come to the conclusion was like, all right, okay, there's this weird thing I'm feeling right now. It hurts. If it's still there in the morning, I'll call. Which maybe that's not the right answer because who knows I may not wake up. But I realized I can't keep giving this power, right? There's this fine balance between the two. So, yeah, be prepared. But I don't want to be overly prepared. So, like, I'm, you know, carrying around, like, a bubble boy pack or something. I don't know.

[00:28:20] Oh, my gosh. So, how, I guess, do you, does it present in any way or is it just when you feel the pain that it registers like, oh, there's something? Yeah, you know, I think that the, one of the other things that I've kind of had my eyes open to is just the effects of medications. So, I've never been on medication. But, you know, now they got me on two different blood pressure medications, you know, cholesterol. I've never had issues with that.

[00:28:48] But they loaded me up in all these medications because they're like, well, we got to keep her blood pressure down. So, normal blood pressure, 120 over 80. They want mine 110 over 70 or lower, right? They don't want my blood pressure to be normal. So, you know, with that came, again, like 20 pounds pretty quickly. Fatigue. I'm not able to, you know, my activity level, I just, I get exhausted so much quicker.

[00:29:09] So, the, I think really the symptoms are more the byproduct of the medications, which I used to dismiss quite a bit when people would be on medications and they would say stuff and I'd be like, bah, you're just. No, it changes your entire makeup of what's going on in your body. So, thankfully, other than that, I mean, it's the dissections in general, you don't often feel. So, unless they get severe enough, like I obviously had dissections that I was unaware of, right?

[00:29:37] So, yeah, I mean, it's not like I've got like this constant thing that's telling me I have this. So, it is that sort of that mental game too that I also have to say, all right, remember, you're not 20 anymore. Right. That's what I was thinking of, like, man, like if you don't, I guess, I don't know, I'm sure it's not easy to forget, but like going through life, you're now having to be conscious of what's happening that you can't feel or that what could happen.

[00:30:04] And yeah, how do you move past it all and just find a new base level of living? You know, one of the hardest things that I had when I got out of the hospital was, who am I? Right. And I overly identified at first with my diagnosis, right? I'm like, this is me. And, you know, quite frankly, like on December 16th, a doctor came in and was like, look, I need you to know this could be your last Christmas.

[00:30:31] Like most patients that we've treated that have a dissection in this general area of the body, they normally get better in a few days and we send them home. Like yours is getting worse. Like we need you to prepare for that. And so that's where they were considering doing a surgery that they said, we don't know if you'd survive. You know, you would be in the ICU for four days just to make certain that your bowels continue to get blood. And thankfully, we had another doctor came in and said, look, you just need to wait. Because we were eager to get out at that point, right?

[00:31:01] And so I'm like, look, if I got to wait two months in this hospital, I will do whatever it takes. I will be that good patient. So, you know, with all of that, if you allow yourself to process things and go through things as they're happening, I think it made my transition to life, normal life, just my new normal so much easier because I'm able to be grateful, right? I'm not sitting here thinking like, oh, I can't.

[00:31:27] Like last night, I had to call my stepdad to come help me with the hot water heater because I couldn't lift it and get it out of my house. Right. And I'm like, it sucks. I hate asking for help, but I'm grateful that I'm here. And so when you can shift your mentality that way and you realize that like your identity is not in your actions, like I'm not bragging here, but I'm the kind of guy that if I'm driving down the road and there's somebody with a flat tire on the side of the road, I want to stop and help them. I can't do that anymore. Yeah.

[00:31:55] Right. And so like one of the real hard conversations I have with God, it was like, who am I still? Like if so much of me was giving and I can't, which in the grand scheme of things is honestly a bit of a red flag, right? I mean, you're so much more. So in this kind of the shift was like, you know what? I don't have to give with my hands, right? Like there's still things that I can do with people that can be encouraging, that can be supportive.

[00:32:23] I can't tell you how many people, I made a stupid TikTok when I was in the hospital and I, so many people have found like SMA dissection and they've like reached out. I'm like, I'm in the hospital with this. I don't know what to do. And I'm like, you're going to be fine. And I didn't have that, right? I didn't have anybody to talk to. And so like, it was, there's those little things that say like, you know what? Me going through that to be able to help other people. Hey, that was worth it. Yeah.

[00:32:49] And that's where with this diagnosis, I know that I'm not alone in this, but I know that I'm, I know there are a lot of people that feel very defeated in this. And I'm very blessed to be built, programmed and entrusted with God, whatever, to allow that to be something more in my life. And so, yeah, that's been the hardest part. But like I said, I wouldn't take anything back. My relationships with everyone have gotten so much better in the last year. It was a wake-up call that I needed.

[00:33:19] Kind of sucks that I'm that stubborn that I needed that way, but I'm so grateful for it. What a story, man. But you know, the world's super fortunate because of you, because of your story, because now that you're sharing this, you may have helped somebody else that has no idea or is kind of going through this and they're like, what do I do now? Like one of the things I remember seeing from you for just like the last couple months is I saw you gone fishing.

[00:33:50] Do you ever get a little afraid when you're fishing that maybe you'll snag the big one and the stepdaughters are going to have to come and reel it in? I was talking to my wife before this conversation because, you know, I try not to be worried about those things. You know, I try to enjoy them. But no, believe me, the entire time my family was like, you better give up that pole if you catch something too big.

[00:34:16] And I'm like, and then I made the joke of I die catching a big fish. That's kind of a good way to go. That was the wrong answer. But yeah, you know, like I'm going to share a very vulnerable moment here. And most parents, I think I probably dealt with it. So fishing, no, but honestly, it's like parenting. You know, we've got our oldest, he's wonderful. But, you know, last night, the hot water heater, like literally it's like water out the side. God bless him. He's a gamer.

[00:34:45] So he's sitting there playing his games like, you know, the world's fine. And I'm like, you know, I hope this thing floods your room and you recognize that I could probably use your help right now. So anyway, him and his mom got into it and he got really ticked off. And so I went in and he, yeah, he got my blood pressure up. I'm just going to say that. And my blood pressure has not been up in, I mean, it's probably been a year. Like I've been very mindful. And I was like, oh my God, like this is something that honestly is not good for me.

[00:35:14] And, you know, and it's like, how do you deal with that? Because like part of it, it's not his fault. It's my bodily reaction. So like things like fishing, I can put the fishing pole down, right? Like that's not a problem. But like relationships, things that my body just instinctively reacts to something. Like I spent the entire night worried. I was like, I really pray to God that little moment didn't cause something to me. That's the bigger struggle, if I'm being honest with you. Kids. Yeah, that's tough. That's tough.

[00:35:43] But also like very like metaphorical, you know? Like you can put that down, but the other part you've got to work on like. All right. Okay, wait. I have one more question before you ask your question. Okay. So I know that you probably had to take FEMLA while you were going through all this. Was that, did that add to the stress of like trying to get better and feel better and take a little weight off your shoulders?

[00:36:12] Let me tell you, it was such a blessing. You know, you know me, I care about my clients. Wasn't my first rodeo and having to go to the hospital for something, you know, former brawls, Lisa Aston was always like, Steve, you just had an ablation. Take a few days. And I'm like, I'm good. Like, so I've always had a work-life balance problem. And so three days in the hospital while I'm trying to work, work called me and they're like, what are you doing?

[00:36:41] And I'm like, what do you mean what am I doing? They're like, you have leave. You know that, right? And I'm like, no. You got short-term disability too. You know that, right? I was like, no. So putting the computer down, putting the work down to be able to focus on me, that was huge. You know, and I think that so many people, one, we want to distract ourselves, right?

[00:37:07] We want that thing that keeps us from having to deal with whatever that we're going through. I wish that people would see that more like I did as a blessing of saying, this is more about me taking care of me, right? And so the process was easy. I probably did rush back to work a little sooner than what I should have. I didn't need to. But again, I care about, I enjoy the work. I enjoy working. And it was probably good for me to get back into some kind of routine.

[00:37:36] But yeah, and that's kind of the hard place of being where I am today, right? Without those kind of benefits lingering, my wife's like, well, what are you going to do? And I'm like, I don't know. Can we not talk about that right now? Because I don't have a good answer for it. But yeah, it was a blessing. All right, Skittles.

[00:38:06] You can ask your question. I was like, okay, my two final questions. Question number one, you can go back in time, the younger version of yourself and give that younger version some advice. What are you telling yourself and how old are you? Oh, man. I didn't get that question before to prep. You know, I think it goes back to control. Control's a funny thing.

[00:38:35] Things can not feel like control, but can really be it. And so I tell my younger self to be more aware of that. And I don't know what age that necessarily started with me. But I became very aware that really in the job search, you know, you apply to a job, you send a follow up. Oh, that's professional.

[00:39:04] I'm going to send another follow up because I want them to know that I'm really interested. Now I'm going to send them another follow up to check on the status. Yes. That's not you trying to get a job. That's you trying to control the narrative. And I became very aware of that. Very much like a kid who smells mom cooking something in the kitchen and you run to the oven. Your mom says, don't touch the oven. So you turn the light on, right? So that way you can see it. Well, why do you want to see it? Because you want to control it.

[00:39:34] There's something that you need to control. And so letting go of that, it has such a cancerous way, I think, of manifesting itself in our lives that we're unaware of. And it really limits people from being able to be themselves for things to be able to naturally happen. And what I'll just say is I've just found where letting go of that control, like some really amazing things have happened,

[00:40:02] even with building the business that I'm at now with paid HGM services. Just trusting that, hey, I did my best. If the work's going to come, it's going to come. And if it's going to come, it's someone that I want to work with. And it's not the right time. And it's just freeing. So, yeah, it's control. Never thought I would have been telling you that, but it's control. All right. Last question for me is what has been the hardest lesson you've had to learn in your life so far?

[00:40:32] Oh, can't use control again because that's hard. You totally can. The hardest lesson, I think, it's got to be in relation to faith. And I guess in some ways that does have a bit of overlap and control. You know, the world tells us that if you need more money, work harder. Right? If you need this or that, you just need to do more.

[00:41:00] And doing more, I mean, listen, you can't expect to provide for your family if you're not working. Right? So, there's an element of that. But having faith that you just doing the right thing will yield the right results. And for me, just that I'm just having faith that God's going to continue to provide for my family and take care of us and my health. I've never been someone that's really good about planning for the long term. So, this whole thing fits me perfectly, right?

[00:41:29] It's like, we're living for the day. But you can't do that either. You've got to have that balance. And so, yeah, I think just having faith in God that He's going to work out all things for my good. Even the bad things, even like the things that honestly you would look on paper and you would say, Steve, it doesn't make sense that you would try building a business after nearly losing your life last year. And all of this, yeah, none of that makes sense. But faith allows you to do the impossible.

[00:41:57] And so, yeah, I think I've had it throughout my life in different times, but not to the place where I am today. And that's okay. You know, I think that you land where you're meant to land at the time that it's meant to happen. And we got to accept that, right? There's no look backs and say, I wish I had done this different. No. All that got you to where you are. Thank you. All right. So, now my questions.

[00:42:25] So, if your anxiety had a theme song, what is it and why? Oh. Oh. Man, I kind of want to give a sarcastic answer here. Please do. Man, I was like, I told myself I was going to be a little more serious when I came on here. Oh, man. You know, and normally I'm really good at coming up with song lyrics and things, but you put me on the spot.

[00:42:50] But my anxiety had, and I had to come back to you on that one. My, thankfully, anxiety's never been something that I've really struggled with. I think I probably have struggled with it more than I realized. I've just had a good way of masking it. Mm-hmm. So, I don't know. Maybe that's Billy Joel a stranger. Because believe it or not, you were there. I just acted like it wasn't a real thing. Oh, I love that. Mm-hmm.

[00:43:20] So, what's your favorite word? See, hers are way harder, aren't they? This takes me back, you know, here's my anxiety. This takes me back to my undergraduate in psychology class, and they gave us a little pipe cleaner, and they said, here, make something that defines you. And I'm like, are you kidding me? I'm not a pipe cleaner. And now you're asking me for one word. Man. You know, it would probably be love.

[00:43:45] And I only say that because I think that if we do all things in and through love, that's the most important thing. I'm going to start there for now. Okay. Great. Now, what's your least favorite word? I have a least favorite phrase, which are silly questions. But the least favorite word. Is it down or dog? No, I hate resentment. Resentment. I love that.

[00:44:15] Now, where can people find out more about you, about what you do, if you have like organizations that they can reach out to if they're dealing with something similar to what you're dealing with? Yeah. So, I mean, obviously, there's, I have social media. Facebook, which is funny. I got off social media a couple years back. And then when I got this diagnosis, folks were like, you should get plugged into some groups. And I'm like, guess I'm getting back on social media. Yeah. So, yeah.

[00:44:43] So, Facebook, which honestly, like I love being able to encourage people and meet them where they are. I just, I found that when you have community, especially community of healthy people, there's a lot of great, there's a lot of communities out there that are very toxic. Steer clear of those. And so, yeah, there's that. And then also, so paid HCM services. We have a website that's a consulting firm that I've built with two colleagues that has been wildly growing in the past. That's just a whole nother conversation altogether. But, yeah, happy to connect there.

[00:45:13] And then folks that are listening that are having struggles with Ehlers-Danlos, the Marfan Foundation, if they're not already connected for the VEDS movement, those are two great organizations. Perfect. Thank you. Thank you. Thank you. I learned a lot in this conversation. Yeah. Thank you so much. You learn to invest in your health. That's what I'm telling you to do. So, I'm going to get right on that. Right on that. Thank you so much, Steve.

[00:45:44] Hi, all. Thank you so much for listening to this episode. I'm G-Rex. And I'm Dirty Skittles. Don't forget to subscribe, rate, and review this podcast. We'd love to listen to your feedback. We can't do this without you guys. It's okay to be not okay. Just make sure you're talking to someone. Oh,