Advocating For Yourself As A Minor

Welcome to the Lyme Voice podcast and radio show. I'm your host, Sarah Slickdy, and this show, believe it or not, is not about illness, but about stories of hope and healing. I discuss the realities of getting a diagnosis of Lyme disease, finding treatment, and the journey through recovery with authors, advocates, MDs, survivors, and practitioners, with a special emphasis on the complex social and emotional aspects of life with a chronic illness. Together, we address the the medical and financial realities that impact households across the globe while simultaneously finding hope, strategies, and treatment plans. I acknowledge the suck factor of Lyme. It is an immensely heavy topic, but I have chosen time and time again to talk about it with authenticity and optimism in an effort to stay focused on what works and how to overcome. In my experience, and the very fact that you are listening to a podcast about Lyme means there is rarely anything simple about getting a diagnosis, finding effective effective treatments or restoring your mind, body, and spirit. It's just complicated. For years now, I've had the experience and privilege of talking with hundreds of patients and practitioners about all aspects of Lyme disease, and I can tell you that healing is possible. People are recovering and that there is a way through. And that's why I'm so glad you're joining me right now, because from this moment forward, you are no longer alone. Thank you for taking the time and energy to leave a review and subscribing. Means a lot to me to read those reviews. Anytime you find yourself in need of energy, courage, or hope, you can tune into Lyme Voice. I'm excited to bring you today's episode.

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Welcome, welcome, welcome to another episode of Lyme Voice, and I am super excited to be here with Ben Struskowski. Ben, how long have we, like, known each other and been talking? Is it a year now or not quite a year?

Yeah, I want to say a year or so now.

Okay, so I have wanted to interview— I think Ben wanted to be on the show the first time he heard it, and then I've wanted to interview Ben since the first time I talked to him because he's a dynamic individual and has already had a long journey with Lyme disease and, and just turned 18. So your childhood has been defined by this illness, and I just think you have an incredible sense of tenacity, and I'm really happy that you're gonna be talking about your story today.

Thank you, Sarah. I appreciate it.

Okay, so give us like a 4 or 5 minute interview. You're 18 years old, and the amount of information you know and the amount of advocating for yourself that I have seen you do in the last year is just off the charts. And the— you guys listening don't know this, but I've talked about Ben on air without naming him multiple times already, in the sense of you found Lime Voice And yeah, then you try—

well, I found it just trying to like find an answer to like what's going on and to find, to find, I guess, somebody who's gone through a similar journey that has found some answers, that's found like hope or something like that that I can finally relate to.

Okay, and so why do you tune back into Lime Voice? Like, you're such a demographic that like you don't fit my normal demographics.

Well, I like every single episode's different and it explains almost every aspect of Lyme, like starting from like one of the biggest things that I've heard you mention is the medical PTSD. That's huge with people with Lyme disease. And then it goes from interviewing doctors and I guess, I mean, I was even called crazy because of the amount of knowledge that I would have towards trying to figure out what was going on. And usually kids are not like that. So I mean, I just love your show because it explains every single aspect that could be explained. Like it just dives in everywhere.

Awesome. I know I've really enjoyed like hearing your perspective on different episodes 'cause it's so unique and it's different. And you know, you're coming from, you're the same age, you're where my son Nathan is about a year younger than you and he has Lyme. And I have compared, I mean, you started listening to Lyme Voice and I think, We've just done a couple of brief coaching calls, but I think due to your personality and who you are, you're really coaching yourself. You're just chiming in and being a voice of support. But when I compare what you know and the amount of advocating and the amount of information that you know, even versus my son Nathan, because in a sense Nathan doesn't have anywhere near the extreme neurological stuff that you have going on. His situation is very, very different, but Because I understand what's going on as the parent. I'm the bridge. I'm like, here, swallow these 14 pills. Like, he hasn't, in a sense, had to dive in the way you have. You've been doing it.

A lot of it is understanding what you're taking because after, after, like, they would keep handing me pills, I would be like, why am I taking this? Like, a lot of it's understanding what you're taking and why you're taking it. That was the start to me, like, really understanding what my illness was. And then after I started figuring out what works for my body, what triggers my body, what flares me, this and that, I would even, like, as soon as my lab reports would come in from LabCorp, I would sit down and read them for an hour and try and decipher what levels raised, what levels were lowered, and what they could possibly point to. And some people would look at that like, why are you trying to do what the doctor's doing? Because the doctor hasn't been doing what they're supposed to be doing for the longest time. So I'm stepping in as a 17-year-old and being the doctor and being the advocate for myself and being the person that I need to be in order so that I can get healthy again.

Wow. Okay, take us back. Tell us how long you've been sick and when your journey started, because you and I have talked about this off air. But what's happening— and this has even changed in the last 6 years since I've been doing Lyme Voice— is When I was in my 30s, I didn't know anyone in their 30s who couldn't get better, right? But now it's not people in their 30s, it's people in their 20s, and it's kids in their teens. The age of onset is getting very low.

Yeah, the age of onset's dropping, and the severity of the disease is also dropped— or is also raising. Like, it's getting way worse for kids. And like, after, like, my parents would come in and I'd be like, oh yeah, I heard about this person with this. And like, I was like talking to them, and my parents would be like, Why are you talking to them about this? Like, that's just like weird. Like, after you go through something, you're crowdsourcing at this point. You're trying to find absolutely every bit of information. But jumping back—

yeah, when did you start getting sick?

When I first got sick was my 8th grade year, and I had this teacher that was all about health and all about wellness, and she actually had stage 4 cancer and she almost died from it. Her name was Miss Madigan. She's amazing. And so she kind of like kept me back because she's like— I would purposely like sleep— well, not purposely, like I would get so sick in class and I would have to leave. She would understand it, and then she would purposely hold me back after school. And she could kind of tell that something was going on before anybody else could tell, whether it was at home, whether it was wherever it was, whether it was a physical illness, she could tell. And so this was my 8th grade year. I just got back from a trip from Cancun. We were going to New York, and then all of a sudden I just started sleeping all the time, left and right, no matter what. Like, nothing made me better. So this was before I started using medical marijuana, and so I just— my parents thought that I was addicted to drugs because I just— my personality changed almost overnight. I was getting gastrointestinal issues. I was going to the bathroom 10 times a day. And then it receded my freshman year. So when it got better, I was doing another nonprofit based down in Parkland, Florida. So after the school shooting happened in Marjory Stoneman Douglas High School, I wanted to help a mom out. Just, I don't know what struck me. There was a kid that used to go to the school that was in that school, so I wanted to help. And so during that time, everything kind of receded, but then it came back with a vengeance and it was exponentially worse. And so I started going to the bathroom, I want to say 15 times a day. I was scoped 3 times within 2 years. No Crohn's, no colitis. And then—

So you're not on antibiotics at this point?

Not anymore. No, I couldn't stomach them. That's why they want to do IVs. So no matter what I would take, I would get sick. So that's why they thought that I had a GI issue at play.

And which of course you did.

Yeah, but, but it's— I actually— so I, uh, marked down on my last blood panel because I always like had an inclination and I was never like really looked into for celiac. I'm actually positive for one of the celiac genes and I was, I was, um, a positive for one of the other tests. So now we're actually looking into it, which again is another thing that the doctor should have been marking off.

So going back to Miss Madigan, Miss Madigan, in a sense, she saw something in you. She was like, there's something wrong here. And what did that do for you?

So she survived cancer. She should have died. Like, she showed me pictures of the way her face just deteriorated. She, like, she even said she looked like a skeleton. And so with that, I guess now even with me, I can kind of see other people that are sick before they see it too. And I'm like, hey, is everything like going on? I see this and that. Like, and they're like, this has actually been going on for a long time now, blah, blah, blah, blah, blah. So like, I guess she had like— after you get sick, you kind of have a sixth sense, you know what I mean? Totally. Sixth sense.

Sixth sense.

Yeah.

So was she one of the first people then, in a sense, who validated what was going on in your brain? As obviously who you are changed overnight, all of a sudden you're sleeping excessively.

And I truly didn't think anything was wrong. I thought that I was just going crazy and I was fine with it. Like, I was— I thought I was just changing. And I would just get angry and I would black out when I would get angry, and it would just be weird. Like, and nobody— and when I would get angry, nobody would be able to describe the way that they saw, like, my eyes or the way that they saw my hands shake. Like, it would be unlike anything somebody's seen. And I would completely rage. It would be like that. And that was completely abnormal. And then I'd forget. And so that was the biggest, like, okay, maybe something's kind of wrong, 'cause people don't do that. The joints hurting all the time, that kind of pointed to it. I was like, this is not a thing that kids go through. Like, that was also the worst. I was just pain 24/7, all day. No matter what. And then I'd be told to get up. I'd be told to do this or do that because they thought that I was faking.

Yeah. So you and I have talked about this, but— and this is one of the reasons I wanted to get you on air— but advocating, I felt like I had to fight so hard to advocate for myself outside of what I was being offered because I was being told in a sense like, oh, okay, well, this is just your new reality. Adjust to life. Or this is your reality after a car accident. Or this is, you know, this is the way your body is coping. And there's conventional— I didn't realize that I was going into conventional doctors and they didn't have answers for me. They were only going to offer me a bandage.

You were going into conventional doctors asking for unconventional methods and they were of course saying no. Yeah, yeah, that's, that's exactly how it was with me.

So, well, and I was doing that as an adult. You are doing this through your parents and through your parents' decision-making. So let's talk about that. I just have a ton of admiration for what you've done because it's so confusing and I couldn't articulate it as an adult.

Yeah, it's very confusing. So one of the examples that I've heard widely used that's helped chronic pain with Lyme or just chronic pain in general, and then it kind of like reassured it was after listening to your show when I heard ketamine therapies. So that's a big one. And as soon as I heard that, I dove right into that because I heard it from somebody else who had epilepsy and some other issues. And so they wanted to do ketamine therapy. And I was like, yeah, I've looked into it too. And we started having a conversation. And then I mentioned it to my parents and they were like, what are you, crazy? And I'm like, hold on a second, hold on a second. You were raised in the generation where you never even smoked. Like, you were so against me smoking. If you do this in a certain situation with a trained doctor, Like, it's not just going out to get high. It's going to find a resource to treat your pain. It's an unconventional method because the conventional methods haven't worked. Like, if this isn't working, try something different. Like, what is there to lose?

Yeah, no, you're so right. Okay, let's go back because you— we haven't even talked about, you know, you talking to your parents as a— what, were you 14 or 15 when you asked them to get your medical cannabis card? How old were you?

I was, I want to say 16. It was, it was no, I was 15 because I was just starting to drive. I was 15 because I was just starting to drive or I was just learning how to drive. And that was the biggest thing. They were like, if you're going to smoke, you're not driving. So they gave me all these left and right ultimatums and they thought, of course, that I was going to pick driving. Like, they were set on the fact that I was going to pick driving. But what shocked them is the fact that I said I'd rather smoke than be able to drive, because if I can't feel okay, then how am I supposed to be able to get up and do anything? And they let that stick. They let me get my permit, but they didn't let me drive. They let that stick for months. I—

it's funny because I was in my 30s and I'm sitting at Outback Steakhouse telling my parents, right? I have 5 kids and I'm in my 30s that I'm gonna get my medical cannabis card. And, you know, and had been on pain meds for years and years that were not addressing the neurological issues. I mean, my pain levels were so high. It was way worse than giving birth to my kids on a regular basis in my joints, in my nervous system. And I was so nervous telling my parents at Outback that I was gonna get a cannabis card because there are stigmas attached to it. And I didn't even understand, you know, even the year prior that you could use it medically.

I didn't understand that either. And that's the biggest thing. Like, that was it. Everybody that has not gone through an illness or has not needed something for a medical— like, for example, medical cannabis for a medical purpose— cannot speak. And that was from a former recreational user myself as a kid. Like, I didn't think—

oh, interesting.

Exactly. And I didn't think medical cannabis was a thing. Like, I thought that everyone was just using it because it was for anxiety. It was just, it was just like, whatever, you're using it to get high or whatever. And then after, it was one day when I started throwing up. I threw up, I counted, 45 times. Sitting down, getting up, sitting down, getting up, 45 times. The back of my throat eroded, and like, there were literally like craters in the back of my throat. And of course, because I thought that nothing was wrong with me, I didn't go to the hospital, which was so stupid of me. Now that I look back at it, I was— and then my legs stopped working. How stupid am I? But at the hospital, what would they have done? They would have given me an IV and they would have kicked me out. It's like a left and right game. So at that point, I had made gummies a couple of days before. I was just seeing if it worked for me at this point. Okay. And so I made gummies and edibles don't even affect me like that. And I told my brother, I was like, I can't move. I need you to go downstairs. I need you to get this plastic bag. It was sealed up so he couldn't even tell what was in it. And so he brought it up. I ate one and then my legs started working again. And it was not an arthritis. This was different than an arthritis. Like, literally, I could not move. And so at that point, I was like, holy crap, medical cannabis is real. I was like, there was no meds. I was on antispasmodics. I was on, I was on neuro relaxers. I was on all this other stuff and nothing did the job that one little edible did. Okay, now I believe.

Yeah. Yeah. Well, and did you ever read Ali Hilfiger's book Bite Me, where she talks about her parents putting her in some some type of an institution of some kind and taking her off of cannabis that she had been using to medicate.

That is actually— so I have not read that book, but that's exactly what happened to me. I was institutionalized because I had 3 suicide attempts, and I was looked in my face and I was told by many doctors, they were like, if you took what you told us that you took, you should be dead.

I was like, okay, well, and this is another thing, you know, I have talked to, it's just like, oh, This is another thing you and I have talked about off air, is that when you do have a neurological issue and you can take drastically high levels to get results that other people are not going to understand.

Yep, for sure. And so when I walked in, they were like, you should have died. And I was like, yeah, that was the goal. Like, I was so suicidal. I was so angry. I broke my hand in the institution. I broke my hand 5 times just because, like, That was what I wanted to feel. And like, my hand was so broken that when they scanned it, it was broken in 3 different places. And that was without like any pain meds. Like, the fact that I was able to do that just should have raised— that's like what drug addicts do. And so now I can see why my parents kind of compared me to that, because that was like some like superhuman stuff. Like, that was weird for me to be able to do. And so, uh, When I was put into the mental hospital, it was Horsham Inpatient in Horsham, Pennsylvania, just for anybody that's in Philly. They said that I was entitled. They said that there was nothing wrong with me on the first day, first or second day, because I was this kid coming in saying that I had all these issues. And then there were kids that were dealing with gunshots every day on the streets. And so When I was in there, I was actually really close friends with these kids somehow. Like, they, the technicians and everyone were like, these, you're not going to mix. They were all telling me, you better watch your mouth, this and that. I was best friends with those type of kids and they kind of like understood there was something wrong. They welcomed, they kind of like welcomed me in when like everybody else was kind of pushing me out. So they told me there was nothing wrong with me. I was, I literally had asked to go to the bathroom like every hour because I had to after I was pulled off every med. And then I dropped from 120 to 99 in 7 days. Oh, wow. And that's when I knew. I was like, okay, I am not— I'm not Munchausen's. I'm not faking anything. This is real.

Hey, let me go back to something you said. You said you broke your hand multiple times. Yeah, because you wanted to feel the pain.

Yeah. And same with cuts, cutting. When I was suicidal, it would— it would— that was the only that I would be able to feel. And that's when I would black out in anger.

Okay, let me ask you this, because is it that you wanted— I understand the psychology with cutting, that it's a release of some kind. It's—

there's release endorphins. Yeah.

Yeah. And there's an epidemic of it in America. But do you think you wanted to feel the pain? Okay. Because you're dealing with so much pain that you didn't understand neurologically, arthritically, in your organs, IBS. Do you think you wanted to feel the pain or did you want to feel pain that made sense to you?

That's what it was. I wanted to feel pain that made sense because then I could hit something and I would see the bruising, I would see the impact. I would see that I could still see the broken hand right now. So, like, it's like, I can see this, I can see how I can fix it, you know what I mean?

Ben, that's fascinating. Yeah, it's fascinating because— so as soon as you said that, like, you wanted to feel the pain— before I got diagnosed, and I was— had already been in bed for 2 years and was going way downhill and was having all these other issues, and I had a herniated disc, which a lot of people in this community have herniated discs, and I was already at a level 10 pain, and then I had months of— I couldn't— I still have atrophy in my left arm from when I had this herniated disc because I went in finally after like 4 weeks to see the surgeon and he says, oh, you're young and healthy, you'll be fine, and you'll be fine. And I'm like, I haven't moved my arm in weeks. I'm in excruciating, off-the-chart pain I can't even describe to you. But it was interesting because as he was talking about, you know, as my surgery and stuff, I told him, I said whatever is going on in my body, like, you fix the herniated disc, whatever is going on is way worse than this herniated disc, which is an off-the-charts pain. But when I was in the hospital after the surgery, you know, I have— I've got a big scar and stuff here in my neck. I told my parents when they came to visit me that, okay, yes, I'm in a lot of pain, but the pain makes sense to me.

Yeah, yeah.

And I could cope with it because it made sense with it to me.

I would The kids that were in Horsham that were dealing with everyday shootings and stuff like that, I would take off the cast that I was wearing or the brace that I was wearing because they didn't want to— they didn't check me out. They didn't X-ray me, nothing until I want to say a couple of days later, they gave me a brace with metal in it in a psych ward. Yes, a brace with metal in it. And I would take the brace off to play cards with the kids. And when I would take the brace off, my hand was every shade of black, blue, green, purple, whatever you want to call it, and the bone was sticking out. And I would still be able to play cards at the speed that they were playing because I was able to deal with the psychological— or I was able to deal with the physical pain of the broken hand because your pain tolerance was so high. Exactly. Yeah.

What are your thoughts on Lyme rage and those blackouts now that you're a few years into your journey?

What are my thoughts? It's super, it's super destructive. There's no— I don't really know even how to stop it. There's no way to stop it, really. It just happens.

I've seen Lyme rage and I've seen blackout. I've experienced more blackouts than I did Lyme rage, and I don't know if that's just because I had 5 kids and I had to hold it together. I did have a couple episodes, but not really. I had blackouts, but not the rage part. But I've just seen it. I've seen perfectly healthy, functioning, caring teenagers go off the edge with this illness and just be in massive suicide watch. And the rage, the depression and the rage and the anxiety is— I've never seen anything like it.

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That was completely how it was with me. I went like over— it was almost like an overnight change. No, it wasn't. The psychological was overnight, but at the same time it wasn't. It would happen like that, but then it would also gradually get worse. It was like it would gradually get worse, but there was that one tipping point that would skyrocket absolutely everything else into, into just like hell. So for example, like I had— I got scoped for the first time and then I was coming out of anesthesia. And like, I thought my mom brought on panic attack. And this was the first or second time I broke my hand. I just went completely crazy and I started punching the stairs. Like, who punches stairs? And so I broke my hand in like two different places. I went down to the neighborhood pool and then the cops were called because like they thought that like something was going on. And so when the cops came, I was just like, oh, what? I don't remember this and this. And so I was literally at the neighborhood pool in bare feet with a broken hand. I was like, I need ice. And so then the cops came, they wanted to check my hand and I was like, no, there's nothing wrong with my hand. I don't know what you're talking about. That's how it was. And I would do everything to like backtrack instead of trying to figure out the solutions to why everything's going on and understanding the triggers.

Well, when you— I mean, all of us are living, we're understanding life as it unfolds, right? And I remember I got sick at 18 and I just like, oh, okay, this is what it's like. I guess you can't breathe and I guess you have more fatigue. And because I'm an adult and so like you're trying to make sense of something that doesn't make sense anyways and you have nothing else else to compare it to because you're growing up advocating for yourself within our medical system, which is deeply broken and, like you said, conventional. But also when what you're doing is not working and you want to try other options and you are negotiating that not just within the medical system but within your own parents. And so let's talk about advocating for yourself between conventional and unconventional and then pulling yourself either on antibiotics or off of them.

Yeah, I was on— well, I kind of couldn't tolerate it even though I would still take it. I would still keep getting sick and sick and sick, throwing up, going to the bathroom. Like, it was the point where I'd be biting down on a towel, crying, going to the bathroom. Like, it was terrible. And still the doctors were like, well, you got— you kind of have to keep taking it. There's like a scientific reason why we go to IV, and usually people that need IV antibiotics are, uh, What's it called? Basically bedridden. And I was like, well, you can't keep doing this therapy that I'm just— I'm dropping weight left and right because of how much I'm throwing up. I'm not going to eventually just keep adapting to it. This is not how you're supposed to live. So the unconventional methods were kind of needed to be used. There was absolutely no other option. It's almost like it was like a last resort.

Yeah.

Okay.

So how— explain the dynamics of, like, also going to the doctor knowing something is very, very wrong and not, like, your test results not being validating that there's anything wrong or you're within normal range.

My test results didn't come back positive until last year, so I was 5 or 6 years sick. And I just talked to another doc, the doctor that my parents wanted me to talk to, and she thinks I have multiple issues at play, meaning autoimmune. She thinks I could have dysautonomia and all this other stuff. So when you're seeing one doctor that specializes in one field, of course they're not going to get you the results because they're not looking at every other possibility that it could be. Well, if you treat this, this way, you're actually flaring up your other disease if you have another disease. Like, and certain people with Lyme complex have those other diseases. Yeah. So it's like a— it's a guessing game.

How much tenacity does it take to be told repeatedly, or, you're within normal range, everything's fine, you don't have whatever you think you have, or it's not as severe as you have— how much tenacity does it take to go back into the next appointment when a doctor is telling you that specializes in a field?

Like, if the for the longest time they thought I had Crohn's. Like, the doctor's telling you that treats Crohn's, but you don't have Crohn's and you have no immune malfunction, like, and you're going up and you're trying to tell them that you're wrong, they're going to be like, who are you? You're not even in this field. Like, you don't— you're not even a doctor. Like, get out of my office. So like, you kind of have to approach it because some of the doctors are very like— they have a high ego because they went to med school. They know it. So you kind of have to approach it with a grain of salt and kind of in some ways make them think it's their idea.

Explain this. Explain more. Give me an example.

With the celiac panel. The celiac panel. My one doctor, he was like, "I don't think you have celiac because you'd be going to the bathroom multiple times a day and it'd be super painful." And I'm like, "Well, I am going to the bathroom multiple times a day and it is super painful. So you know what? I'm going to mark off the celiac panel on your blood test." and they're going to let me do it. So they did. And I was positive for one of the genes, and I was, um, I think it was a weak positive. I barely ate anything, so of course there's not going to be any, like, positive gluten proteins in my system. Because I know a lot of people that had to eat gluten the day before their blood test, like, huge amounts, in order to even get any result to flare up their blood tests. I did that exactly. Yeah. So I mean, after it takes so much effort to tell a doctor, and like there was so much arguing and fighting and fighting and fighting and fighting and fighting. Did I say fighting? In my household, whether or not my blood test came back positive or negative. And my pediatrician was like, I think your kid has Munchausen's. And I was like, for a doctor to say that when a kid is trying to struggle and find answers, like that's ridiculous. Like I can't believe the doctor would say that.

I'm sorry that happened, Ben.

Because I have information. I mean, he retired, so it's okay.

I love the fact that you just checked the box yourself. Oh my gosh, I would never have thought of that.

What do you mean, check the blood tests? Yeah, yeah, because like I was told at one point in time that that's something that you could do, like by a certain nurse. I'm not gonna say who, but like I was told like, yeah, you can— a blood test is just a blood test that a doctor orders. Insurance will still cover it and everything. So check off the box and then it's not going to hurt you. It's not going to hurt you. It can only help. And so for the longest time I was like, I just feel like, and it also has to do a lot with genetics. I'm Eastern European. Europeans are a lot with celiac and Crohn's. So how would it hurt? I never had the celiac panel. How's it going to hurt to check it? Turns out I'm positive.

Yeah, it's so weird because in a sense doctors are very willing to run tests and endless lab work, but when it's specialized lab work or it's labs they don't understand, it's hard to find a practitioner who will even check the box to run the labs if they don't know how to read them.

Yeah, for sure. Oh my God. Yeah, if they don't know how to read it, it's like I've been to AI or CHOP and they— I've— because I've been so sick at points in time. And I've brought my labs to them and they've been like, we can't read this, we don't know what to do with it. I'm like, wow, thanks, that's a lot of help, specialist.

Yeah, let's talk about medical PTSD.

Oh, that's a big one.

You start. Okay, well, let's just use the recent example that you just shared with me where after these 5, 6 years of being sick, you went to an infectious disease doctor recently who actually acknowledged what was going on.

Yeah.

And validated you. And that was— could we use the word shocking to you?

Yeah. No, we could use the word profoundly shocking. There's two words for that one.

Profoundly shocking.

It was astounding, actually. Let's use that one. It was astounding because there's never been a doctor that's been like, yeah, like, there's definitely something wrong. But like, after my dad sent like all the labs and stuff to this lady, like, okay, like, I can see where she— she'll be like, I understand where you think you have issues, but you're just a borderline positive. Like, I was just prepared for this lady to be like, I've seen lupus, I've seen life-threatening lupus, I've seen every disease. Like, that's what I was truly prepared for because that's what I dealt with at CHOP. When I tried to say that I was sick and they threw me in their diagnostics department, rheumatology didn't even take blood from me at CHOP, the children's hospital. And I heard that a lot of people were good there. A lot of people got diagnosed. And then when they didn't take blood, I was like, what? I was kind of taken aback. Then they said I had amplified pain and nothing was wrong. And that was what set the stone of, I guess, medical PTSD because after a doctor's telling you, you don't have any blood levels that are off. Well, you didn't run any, like, new ones. Like, you didn't run any new, uh, what's it called, you didn't run any new protein factors. Like, you didn't run any, any new, uh, IgAs, IgGs, and IgM immunoglobulins. Like, how can you tell me that there's no blood levels coming back when you just didn't run it? And I didn't know that they didn't run it until a year later when I looked back at the records, because when you're first starting out, you don't know what's going You kind of have to figure everything out on your own.

Wow, that's a really good point.

So I didn't know what immunoglobulin was, and now that I see that my immunoglobulin A is in the toilet and my immunoglobulin M is through the roof, obviously now I know that I have an infection or my immune system's weak. But somebody that's just like starting out doesn't know that.

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Exactly. But if there's— with a lot of people, there could be some— there could be multiple things wrong, or there could just be— when there's just one thing wrong, it's simple. But in Lyme complex, there's usually multiple things wrong. So when you address one thing, another thing flares up. So there's no real one-size-fits-all, and that, that's the most complex part of, uh, Lyme.

I think what's different about you, Ben, and I've talked to hundreds of people now at this point over the last 6 years of this podcast, is especially for your age group, I see historically, because large percentage, somewhere between 30 and 40% of the coaching people that I do on a regular basis, it's with the caregiver or usually the parent that is advocating for especially a kid your age or someone who's completely debilitated. But what I see is that because of their age, because of not knowing what's going on, because of being told repeatedly that like, oh, they just have anxiety or they just have inflamed pain levels, which as if that, or it's just depression or it's something that they quit going to the doctor.

Yeah, I know a lot. I've talked to a lot of people like that too because they're like, it's just going to drive you crazy figuring out what it is. I was like, well, I mean, if you don't figure out what it is, then there's going to be no way to treat it and you're not even going to be able to do anything. So like, it's a double-edged sword.

How do you talk yourself into keep going?

I just do. I don't think about it. It's something that I have to do when there's doctors that are saying you have nothing wrong, and then there's other doctors that are saying you do have something wrong. It's kind of like medical— or medicine is subjective depending on what doctor you ask. Like, one doctor can see cancer and another doctor could be like, are you crazy? That's not cancer. You know what I mean? Yeah. So, I mean, it's kind of just like— it always interests me too. So like, every opinion that I hear is always either a different one or it's, it's just It's a collaborative group, you know what I mean? And there's always— there's either a negative or a positive. And no matter what it is, I'm going to take from it. And it's just a learning experience. Hmm.

How did you come to that conclusion?

After I was thrown in the nut hut. Yeah. After— well, after you spend some of the time in the darkest moments of your life, just like laying down, just like thinking, where did I go wrong? And then thinking that it wasn't you that went wrong. Like, you kind of just have to hear what people have to say and then you take what you want from it because not everyone's going to say what you want to say and not everyone's going to say what you don't want to hear.

You said something in one of our initial calls, you said that I just thought was so profound for your age especially. You said when people don't understand, they make preconceived judgments.

For sure. Yeah. Especially with the medical cannabis, I feel like. 100% with that because like when before it was looked at as like it was just a, it was a gateway drug and now your gateway drug is being used by a state program. Like it's the state's, like I don't think people realize it, it's the state program that is running medical marijuana. Your gateway drug is now saving people's lives. Explain that to me. Preconceived notions.

If you know the history of cannabis, you know that it was already, doctors were doing research And there was all sorts of stuff coming out in the— I think it was '50s and '60s, '60s especially, before the government came in and said, yeah, no, we're not giving you access.

It was— yep, and it was shut down. So then everybody was like, oh, it's just a gateway drug. But then once people started using it to their benefit, and it was used to help cure cancer, like Rick Simpson, that the oil, Rick Simpson oil, It was named after a man, Rick Simpson, who used it to treat his own skin cancer.

Yeah, I did a regimen of Rick Simpson oil for several months.

I do. Yeah, I take Rick Simpson oil every here and there because I also have, um, Candida. I, I've gotten thrush 5 times within the past year. So like, and obviously like, that's only little kids or adults get thrush. Like, like older, older people get thrush. For a teenager to get thrush 5 times in a year is obviously pointing to an immune malfunction or an immune issue. Oh yeah, your gut. Not be able to get it. It's just like, how?

Oh, you had thrush 5 times?

Yeah.

In addition to— Rick Simpson kills thrush so well. I would take like a drop or 2 of that and it would kill it within the next day. It's so good for antibiotics, so good for your gut. Oh my God, Rick Simpson's amazing. The oil is amazing, and the guy, great guy.

Yeah, his story is interesting. Okay, so give us an— where do you think you're at on— I know you've been sick for a long time, in a third of your life, so it's probably hard to quantify, but where would you say, like, what percentage are you functioning at every day physically?

Oh, I would say I'm about About what? I'm at 30% right now. 30%. And I'm still trying to go out and all this other stuff. I'm trying to do everything I can, but right now I'm at 30% functioning. If I was okay and I had everything, I would be out all the time. I would be lifting weights. I'd be doing everything that I could to be healthy because now that I can't.

What are your pain levels like?

They're pretty high at times, but I can kind of like— I've been able to deal with it. So it's been at bay recently. So it's been like a 2 or 3 recently, which is— Okay.

But you're also doing a lot to deal with it.

Yeah, exactly. So the more you do to deal with it, the lower it'll go, obviously. And you just got to figure out different treatments.

Where do you think you're at Cognitively, because you see, I mean, you're so articulate and I've like looked at medical records with you and like, you know so much.

My friend is sitting next to me and he just held up a 4 as soon as you said that. And I was cracking up because like, I'll just ask the same question like 10 times and I'll be like, yeah. And I'll be like, it's those type of things. And like, or like the other day, This is not one of my proudest moments, but like, I thought it was left on red. Uh, yeah, like, my brain was like— but I, I have never done this before, and I almost— I literally almost got hit, and then I kept going because like— and my, my friend was arguing with me. He was like, Ben, it's not left on red! And I was like, yes it is, shut up! Like, like, we were going at each other. So like, for that to be like Yeah, my cut can vary on day to day.

It varies. Well, and what I'm sensing too is like cognitively you're focused on— your world consists of trying to get better, trying to get to appointments, trying to function. And so you can be hyper-focused on that and literally forget left on red, right on red.

Yeah, exactly. Literally, that's exactly how it goes. Or like, I'll be so focused on trying to get to a bathroom that I'll go down a one-way. It hasn't happened recently, but it's happened. That's not my proudest moment or anything, but I'll just be trying to rush so bad. People don't get it. It literally has not been like that for, knock on wood, I want to say 6 months now. But once it gets to that level, people don't understand how bad you really have to go to the bathroom.

Yeah, well, we've talked about struggling to get a diagnosis, but let's talk about what the diagnosis is— diagnoses that you have had. Connective— connective tissue disorder, celiac, Ehlers-Danlos.

Celiac is not officially diagnosed yet. Okay, so we're— it's— that's in the— that's in the pre-stages. I definitely have Lyme neuroborreliosis. That was 100%. Um, I'm immune deficient. There's like 10 of them. There's immune deficiency, there's adrenal insufficiency, pituitary insufficiency, and then there's PTSD, OCD, major depressive, generalized anxiety. There's just like the list of mental ones also take a toll too. And it's all about understanding when the mental ones kick in the physical, when the mental affect the physical illness.

Explain that. When you get—

when I get stressed, I flare so bad. Like, I start getting sick, I'll throw up. Like, it's so hard to explain. And my parents would be like, well, you just got to keep your stress at bay. And I was like, how am I supposed to keep my stress at bay when, like, the things that I— that stress me are out of control? So when you try and tackle the illness but you still have stress, you're not going to be able to tackle the illness. At all, because there's something that's always going to be keeping you back and pushing you back. Hmm.

Well, and it's an entirely different level of stress to be like, oh yeah, I need to modify the stress of my life or the chaos versus, okay, my legs don't work this week. Yeah, I had a seizure this week. I was in the ER. I mean, these are for sure things you've experienced.

Oh yeah. I haven't had seizures or anything like that, but I've— my legs have definitely stopped working. I've like, the brain fog will be bad certain days, worse than others. Like, and it's all like give or take and it'll all be random. Sometimes it'll be affected by weather. When you know it's affected by weather, you can feel it. Like, it's also about understanding when, what happens and why it happens.

Yeah, I agree. I agree. I think the fact that you can articulate that is really huge because obviously one of the interviews we just did recently, Dr. Brad, he was just talking about how The stress, same thing, your stress levels, your environment, the quality of your relationships, all is going to impact how your immune system is going to function and respond to things. And you're talking about, okay, there's these aspects of basic life and dealing with all the psychological stuff of neuroborreliosis, like that's a whole different thing. But then beyond that is when your legs are not working, when you have to go to the bathroom 15 times a day, when like those are stress levels that that I think you can't comprehend unless you've been there because it's so absurd.

Yeah, planning your bath or planning your everything around a bathroom is just terrible. My cousin who had ulcerative colitis and she almost died from it, she had to plan absolutely everything around a bathroom. And I was never old enough to see what was really going on. But now that I look back at it and I'm like, holy crap, And her case was like she would go to the bathroom like 30 times a day and there would be blood. And like, just even dealing with that, like, I— it takes every piece of you to wake up every single day and face the world.

Hmm. You're not wrong.

Yeah, it's a lot.

So what would you tell kids in your situation? How do you empower them to wake up and face the day with or without support?

It's hard. It's really hard because everybody's different. So like what makes me want to fight could be completely different from what makes somebody else want to fight. Like it's different for everybody. You just got to find what you want to do and what you're passionate about. Like ever since medical marijuana changed my life, I want to study that now. Like, and I want to study the composition and stuff like that. So I guess that's what made me fight forward. And now I'm applying actually at a dispensary up in Pennsylvania, get my foot in the door, and hopefully, like, go up. And you know how you can work your way up through Amazon? Work my way up through that. So it's all about figuring out what you love to do.

So I literally just had this conversation with a coaching client this week, and one of her goals was to— coming out of recovery and treatment— was to get back to going to work. And her work requires long shifts. And she really wants to get up to doing these 10-hour shifts.

And I was like, um, you won't be able to just do it right away.

Yeah, well, that's the thing.

I'm like, okay, okay, like, well, so the thing that we talked about is for her that's very fulfilling and rewarding for her personality. And one of the things I told her is that I said, sometimes you can do those, sometimes you can go back to what was fulfilling for you. Sometimes it's going to take a couple, 2, 3 years before you can get back to those levels. But I think a big part of the journey for me has been in figuring out, like, okay, what used to be fulfilling isn't attainable for me physically, emotionally, financially, whatever the case may be.

Yeah.

I, I— and I think it's one of the hardest aspects of this journey is you have to find different ways of fulfillment.

Yeah, you have to find— like, for me, when I was sick, I would play the piano like that, and that was one of the things that— and that was something small that when my fingers would hurt, like that was just like a small little exercise that I could just get used to doing. And I would work my way up to eventually going out. Like, I don't even have a job still because of my illness, because it's like day to day. Like, I DoorDash here and there, like just to pay for the necessities because like, you don't know what day you're going to wake up and it's— you're going to feel like absolute garbage, like, and you don't know what day you're going to be fine. But at the same time, like, When real life hits, you're not gonna know what days it's gonna happen. In reality, your boss isn't gonna care. So you gotta— I'm still finding my ways to work through it and figuring out different coping mechanisms to work through it. You know what I mean?

Well, I wanna commend you. I hadn't planned on saying this on air, but I mean, I've gotten those text messages from you when you are out doing DoorDash and you were a 17-year-old kid who's trying to figure out how to pay for the next step in his own treatment. Program, and DoorDash is a way to work around the day-to-day realities that you have. Like, yeah, you're a phenomenal human being.

Yeah, thank you. I appreciate it.

You're gonna do what you have done for yourself and empowering yourself and not giving up and waking up and facing the day with so much on you. Like, what you are gonna do for the rest of your life, and when you don't have all of this weighing on you, or you figure out how to go around that next obstacle Dude, you're gonna be limitless.

Thank you.

It was funny because one time— I'll conclude here— but you and I were texting back and forth, and I had recommended the book by Ryan Holiday, The Obstacle Is the Way. Do you remember what you said?

The obstacle is the only way.

Yeah, do you remember what you said when I— when we were talking about that book? You—

I think I said the obstacle is the only way, or the obstacle is the only way, like, through, or something like that.

No, you said the obstacle is the only effing way.

Yeah, yeah, yeah, there you go. That sounds like me. That's definitely me.

Which I was just like, oh yeah, you know, because you can look at the situation and say you have a lot of situations not working towards your benefit right now, and you can look at it and be like, this sucks, this isn't fair, I'm staying in bed. And you're not doing that. You're looking at each obstacle and saying, how do I get around it?

Yeah, well, not every day at least.

Okay, that's actually very fair. Of course it's not every day. It's not, it can't be. You have—

there are days that you have to just be in jail and yeah, and there are days that I'm just like, I need to take a break. But it's all about knowing those days and not listening to the people that are like, you get over it, you're— it's just mind over matter. But it's not mind over matter.

Yeah, yeah, what you put in your mind does matter, but it's not, it's not mind over matter.

I agree.

Ben, thank you for your time. Thank you for being here.

No problem, anytime, Sarah. Thank you so much for having me.

Thank you for your voice. Oh my gosh, I've just really enjoyed like getting to know you and watch your journey.

I love this Lime voice. I was thinking of Lime Laser. I don't know why I love Lime voice in this podcast, but sorry, ties back for Lime Laser and Lime voice. Just keep— every time I text you, it's weird. But I love listening to your podcast when I'm DoorDashing or when I have free time because it just is so informative and it provides so many perspectives from so many different people in the world.

And really enjoyed being on your show. Awesome. Thanks, Ben.

Thank you so much. I'll see ya.

Hello, friends. Today's podcast is brought to you by these sponsors: Medical Bill Gurus. The experts at Medical Bill Gurus are dedicated to innovative solutions for any medical billing scenario, which we all have in this community.

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With empathy at the forefront At the forefront of their daily mission, Medical Bill Gurus is dedicated to being in the trenches with patients and raise awareness for the daily challenges facing them. From medical billing errors to raising awareness for their diagnosis, Medical Bill Gurus takes pride in speaking with patients every day and helping them find guidance on how to navigate our broken healthcare system. Their patient advocates are available to help reduce medical bills and assist patients patients with navigating a dynamic health landscape. I also interviewed Daniel Lynch, an founder of Medical Bill Gurus, in episode 111. In addition to helping you get money back from your insurance company, if you need help deciphering what health insurance provider to choose— and I have done this several times a year for years now— or you are looking for a clinic that is covered by insurance, they are great resource for all things related to medical bills, figuring out which insurance provider you could or should have. They're an awesome resource. Again, I use them multiple times a year. Give them a call. All right, now on to the show.

This is just my opinion, but I think the best, most authentic, vulnerable and memorable parts of these interviews unfolds in the fourth quarter.

So I am so glad you are still with me.

I get messages from so many of you saying that you are listening to LymeVoice when you are implementing daily protocols, driving back and forth from appointments, or detoxing. However you are spending your precious energy, I'm so glad I got to be a part of it. Remember to follow LymeVoice on social media and subscribe and leave a review. This is a common sense and medical disclaimer, people.

I am not a doctor or a therapist.

I am not an authority on actually treating Lyme disease, but I have become adept and skilled at living with it. So take these experiential conversations for what they are, which is practical survival skills in the land of chronic Lyme disease. But for actual medical advice, go to someone with credentials.