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Patient Stories, Podcast

Finding Strength after JIA and Macrophage Activation Syndrome: Zac’s Story of Tenacity

3 weeks ago
72 min read
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Summary:

On this episode of The Arthritis Podcast, Cheryl sits down with 28-year-old personal trainer Zac Spinosa to discuss his powerful journey with Juvenile Idiopathic Arthritis (JIA) and macrophage activation syndrome.

Diagnosed at just 15, Zac opens up about the difficult shift from being an active athlete to facing disability caused by arthritis and its complications. He shares how strength training became a turning point and helped him regain mobility, lose weight, and rebuild a fulfilling life. He also explores how his background in strength training helped him survive a near death experience with macrophage activation syndrome.

Together, Cheryl and Zac explore the role of exercise in managing arthritis, offering practical tips, tools, and encouragement for others navigating similar challenges. Zac highlights the importance of pairing medical treatment with disciplined strength training to enhance both health and quality of life.

Episode at a glance:

  • Zac’s Diagnosis Journey: Zac Spinosa, 28-year-old personal trainer living with Juvenile Idiopathic Arthritis (JIA), shares the challenges of shifting from active athlete to living with disability. 
  • Turning Point: How strength training helped Zac regain mobility, lose weight, and rebuild his life
  • Practical Takeaways: Tips, tools, and advice for using exercise to manage arthritis effectively
  • Holistic Approach: The importance of combining medical treatment with disciplined strength training
  • Inspiration for Listeners: Finding resilience, strength, and quality of life while navigating chronic illness

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Zac Spinosa

From systemic JIA to RA and Macrophage Activation Syndrome, I am a strength Specialist and Public Speaker. At 16, a diagnosis of Juvenile Rheumatoid Arthritis shook the foundation of my active life. Struggling through daily tasks and experiencing significant weight gain, I found myself at rock bottom. In the depths of despair, I discovered the transformative power of fitness, guided by the unwavering support of my father in the gym and my family outside of it. From the initial struggle to walk, I gradually progressed to lifting weights. Fitness not only rebuilt my physical strength but also mended my shattered confidence. This newfound resilience fueled my determination to share this gift with others for Forge Fitness. 

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

[00:00:00] 

[00:00:10] Cheryl Crow: All right. I’m so excited to have Zac Spinosa today to share his story and talk a little bit about why strength training is so important for people with inflammatory arthritis. So, welcome, Zac. Can you let everyone know where do you live and what is your relationship to arthritis?

[00:00:27] Zac Spinosa: Hello everybody. I am Zac Spinosa. I’m 28 years old now, I feel like I’m getting older by the day, which I guess I am. And I’m from basically Niagara, Ontario, Canada, and I got arthritis, I was diagnosed 13 years ago now, 14 years ago when I was 15. And I was dealing with growing pains or what I thought were growing pains for about four or five years at this point.

[00:00:51] Zac Spinosa: But I was a relatively active kid and did a lot of stupid things where I would get hurt, so could have chalked it up to about anything. And my relationship with arthritis [00:01:00] is in short form. At one point in my life I was extremely active MVP of a, of my school teams junior athlete of the year, to the point where the end of that year came, I was on a walker and I was unable to put on my own clothes, to brush my own teeth.

[00:01:14] Zac Spinosa: And because of that, I went on medications that created a significant amount of weight gain and loss of mobility and lost myself. And fast forward, I almost actually died to arthritis from some complications. So we’ll get to that story in the future. 

[00:01:31] Cheryl Crow: Yeah, thank you. It is something that, you know, the juvenile idiopathic arthritis carries with it the risk of some, like actually more deadly complications than even adult rheumatoid arthritis, which is what I have. So I always, I feel like people need to be informed of this.

[00:01:50] Cheryl Crow: I’m jumping ahead, but we both actually were at juvenile arthritis camps over the weekend, by the way, for people listening. So, I’ve lost my voice a little [00:02:00] bit ’cause of all the yelling and the singing and all the fun stuff at camp. But they actually covered that in the parent group that the doctors gave at our camp about macrophage activation syndrome and what to look out for.

[00:02:11] Zac Spinosa: So crazy. 

[00:02:12] Cheryl Crow: But let’s go back to your story. So when did you get the official diagnosis, you know, of juvenile idiopathic arthritis? 

[00:02:18] Zac Spinosa: Yeah, so I got officially diagnosed when I was just about to turn 16. It was systemic juvenile idiopathic arthritis, which I found out over the weekend as one of the rare most rare kinds to get.

[00:02:28] Zac Spinosa: And I was getting extreme rashes on my body. So it wasn’t necessarily extreme joint pain at the time, or swelling. It was mostly these crazy hives, like all over my arms and on my chest and my back. And it was so painstaking that I would like scratch without while I was sleeping and wake up covered in blood and it was terrible.

[00:02:48] Zac Spinosa: And then from there, the rashes started to go away after the diagnosis, but the pain kept coming and getting worse to the point where now I have wrist fusion. If you’re watching this, you’ll see my wrist not bending very well.

[00:02:59] Zac Spinosa: [00:03:00] And it was a really tough transition right from being an athletic kid where my entire identity is about being strong, healthy fit chasing after girls, all the fun things you do when you’re a teenager to, you know, losing that entire identity and being locked up in a room and having asked my brother to button up my uniform shirt, having asked my mom to help me brush my teeth, my dad helped me carry me to the bath so I could bathe myself because I wasn’t even able to stand in the shower at some point. So it was at 15, that was pretty jarring.

[00:03:28] Zac Spinosa: And at the time, 13 years ago, there weren’t Cheryl Crow, the arthritis queen out here, right? Or even myself, like giving back to the community to understand about strength training and all these different factors that you can do for yourself outside of waiting for the medications, the work, and for your doctor’s diagnosis.

[00:03:45] Zac Spinosa: So I was kind of in the dark and just in pain., Scared and lost. 

[00:03:50] Cheryl Crow: Yeah. I’m just so sorry you, you went through that. And it really is, it’s strange how many athletes get JIA and adult inflammatory arthritis. [00:04:00] ‘Cause I was as well. I went from being the captain of my college soccer team, division three, which is not like the high, it’s not the highest level, but it’s definitely, you know, we 

[00:04:09] Both: still, yeah.

[00:04:10] Cheryl Crow: And I, I lo I had severe rheumatoid cachexia or cachexia, like the muscle wasting, so I went from 130 pounds to 105 pounds before I got diagnosed with RA. And similar to you, my joints didn’t really bother me. I just had a couple what I thought were sprained fingers. But they didn’t even bother me as much as the more systemic symptoms.

[00:04:28] Cheryl Crow: So, anyway, long story short, that loss of identity, I think particularly what I’ve heard from other men that I’ve spoken with is, you know, there’s as a young boy or young man or young adult, you’re you’re supposed to be quote unquote strong and then to lose.

[00:04:41] Zac Spinosa: Yeah, of course. 

[00:04:42] Cheryl Crow: So hard, I’m imagining. Yeah. 

[00:04:44] Zac Spinosa: For me that, that’s exactly it, right? In my friend group, I was the fastest guy. Like I, when we’d wrestle in the pool or wrestle and stuff, it was my whole thing was be being the tough guy in a sense. And unfortunately I didn’t have the knowledge on how to discuss what I was going through or [00:05:00] neither did my parents.

[00:05:01] Zac Spinosa: Of course, there wasn’t enough resources out there for people to know, and everybody just thinks of arthritis as this old person’s disease. You can’t really see it. I was also kind of a whiner as a kid too, right? So it was hard to know. Is it really that bad? Like how bad could it be? And then funny enough, now I’m the complete opposite where things could be terrible and I don’t even say anything to people, right?

[00:05:21] Zac Spinosa: So, it was tough. So I lost a lot of my friends during this process. It was also the time when people start drinking and doing drugs and all those types of things, and thankfully I never did any of that stuff. But it was a hard decision to make because the only thing I could do to be around my friends was to do those types of things and I didn’t. And I also couldn’t, realistically, I wasn’t able to leave my room and no 16-year-old kid, especially boys that are active, which where all my friends are gonna wanna, you know, come over and watch a show or play video games during the summertime, right? So that kind of really sucked for me.

[00:05:51] Zac Spinosa: And I was 185 pounds in good shape. By no means was I jacked or anything at the time I was a kid. But by the time I got back to grade 11, [00:06:00] I was like almost 300 pounds, right? So from the high dose of prednisone and the lack of movement and when you’re a kid, you eat like crazy amounts of crappy food and, but you’re so active that it doesn’t really affect you as bad.

[00:06:13] Zac Spinosa: It affected me ’cause I wasn’t active anymore, right? Plus medications, so going into school and then dealing with the bullying side of things and being all fat and all these different things because I’m walking through the hallways with a walker after being this, you know, not giant but giant athlete of the school.

[00:06:30] Zac Spinosa: It was it was scary and it really messed up my mental health side of things. And I’m not one, especially as I’ve grown older to, I don’t like labeling things like depression, anxiety, because I don’t think that’s necessarily fair to people who deal with it truly, you know what I mean?

[00:06:44] Zac Spinosa: I was going through a depressive time and obviously I was anxious about going to school and dealing with things, but I wasn’t suffering from like an actual full on mental disorder in a sense. Right. And it was just the circumstance there in were terrible. They were treacherous and I didn’t have the tools to [00:07:00] deal with them.

[00:07:01] Zac Spinosa: It wasn’t until I switched out of pediatric care with my arthritis, where I met my adult rheumatologist, who’s now one of my colleagues and one of my best friends and mentors in life. The guy’s a an absolute unit. I met him and I remember the guy was this like beautiful frigging stunning jacked guy.

[00:07:17] Zac Spinosa: And he is you know what, buddy? You know, you’re looking at yourself right now and how you’re feeling, and I know it’s terrible and the medications aren’t working, but we’re gonna get you on something good. And that’s when I was introduced to biologics. And those biologics, like they definitely worked a very well.

[00:07:32] Zac Spinosa: I went from limping every step that I took to limping a lot less. And there was only days where I’d have really bad pain and the rest of the days were relatively normal. I’d say a four outta 10 is like what I live at with pain. Which is to me nothing at this point because it’s just normal. But Dr. Saed shake, he said to me, crazy guy he grabs my hand and I, he puts it on his stomach and he is got abs. And he goes, this is gonna be you one day. Right. Which is so [00:08:00] funny.

[00:08:00] Zac Spinosa: He’s a legend and he can be definitely taken the wrong way by the wrong people.

[00:08:03] Zac Spinosa: But he I was at his house on Friday having dinner with him and he said to me, he’s I remember seeing you and your family for the first time and the look in your eyes that you were listening, you wanted to get better. And you asked me, what can I do? What can I do to make this better? Not, what are you gonna do for me?

[00:08:19] Zac Spinosa: And that’s when he talked to me about exercise. And my dad has had a gym his whole life, not like a business, but just in his, a home gym. And he was always trying to get me to exercise and he’s you gotta do it buddy. You gotta do it. And I’m Italian, I’m old like my dad, my family’s very old school.

[00:08:32] Zac Spinosa: So my dad’s like, all right, it fucking sucks, you’re in pain, I get it and I hate it for you. It kills me. What are you gonna do about it? It’s been a year. You’re depressed, you’re laying in your room doing nothing. You’re complaining every single day, and it sucks. And I know that, but you’ve done fuck all, excuse my language for the past year, except moan about it.

[00:08:51] Zac Spinosa: What are you gonna do? So then when I meet Sayed and he is telling me the same thing, and then very intellectual doctor way, I’m like, you know what? Maybe it’s time for me to try [00:09:00] something. So I started walking and it was as simple as that. I started doing a little bit of walking, 10 minute bouts, 15, 20 minutes.

[00:09:06] Zac Spinosa: Next thing I know, I’m like, whoa, I’m doing more. Like I, I couldn’t do this two weeks ago, but I’m doing it now. What changed? I took action, right? And because of that, I felt so empowered by the fact that it was me doing this. It wasn’t my doctor, it wasn’t my parents, it wasn’t my friend. I was actually back in control.

[00:09:25] Zac Spinosa: It wasn’t my body beating me up. I was beating this disease up and that’s how I viewed it. I started exercising, lifting weights, and it was little things like I could barely squat to a couch, so I squatted at a high at a high chair, and then I couldn’t bend my wrist. So I found ways to work with my knuckles to make sure my wrists weren’t damaged, and I just found different ways to utilize the tools that I had to strengthen my body.

[00:09:48] Zac Spinosa: And within a year, I went from almost 300 pounds to 185 pounds. I was looking better, I felt so much mentally better. I had so much more ambition and drive again, and [00:10:00] I saw a path forward and instead of feeling lost and destroyed, I felt holy shit, like I have a life ahead of me, you know?

[00:10:06] Zac Spinosa: And I’m so thankful that I actually got diagnosed with arthritis. ‘Cause I don’t think I really grasped how credible it is and what a privilege it is to move and to have a life that you’re in control of. To be born in countries like we’re in, where we actually have freedom and choice and expression. It’s incredible. So because of arthritis it changed my whole trajectory of life.

[00:10:26] Zac Spinosa: And about three and a half years into this, I turned 21 years old from the time I started exercising and I opened a personal training studio because everybody around me is asking me, how do I do this? How do I do this? And then my dad’s open a business. So I did it. 

[00:10:40] Cheryl Crow: That’s incredible.

[00:10:41] Cheryl Crow: And I mean, it really sounds like, probably partly from your background as an athlete, you had a drive for movement and, but it was when your body changed so drastically, it’s no one helped you understand until that doctor, it sounds like that you could still move with this.

[00:10:59] Cheryl Crow: It’s just [00:11:00] gonna feel a little different and look a little different. I don’t know if you ever had this feeling, but a lot of people that I talk with, like in my support groups and even myself feel like because it’s an autoimmune disease, it’s like your body is attacking yourself and you almost feel like you’re at war with your body. I’ll admit, I only started strength training two years ago, by the way. And it has made a huge difference for me. it has changed my relationship, being active changes your relationship to your body and makes you see your body as- I have arthritis, and my body can still do awesome stuff, you know? 

[00:11:30] Zac Spinosa: I think that what you said was beautiful there, though. And you know, there’s times where I’m in so much pain when I’m doing some of the crazy things I do. Like I’ve dead lifted over 600 pounds, I’ve squatted over 500 pounds.

[00:11:41] Zac Spinosa: Now I’ve can bench press almost 400 pounds. And right now I’m preparing to fight in 2026 for both Brazil Jiujitsu and Muay Thai, which are probably not great ideas for my body, and I understand that. But my mission since, especially changing my whole shift of gears with really trying to get back to the community of [00:12:00] people with arthritis, that, and chronic pain and disorders like this is if I can do all these crazy, stupid things with my body, with this disease, you can do half of it, which is gonna bring you so much more happiness, right?

[00:12:13] Zac Spinosa: Like freedom of expression and movement is so incredible. And when it’s taken away from you, it’s the worst feeling ever. I had such a worse experience than just arthritis with a macrophage activation syndrome. That like completely shifted my perspective on life, and I’m sure we’ll get into that. But yeah. I love that you started strength training. That’s so good. 

[00:12:33] Cheryl Crow: A hundred percent. And I definitely wanna talk about the strength training and also the ways as you were talking, I was thinking more broadly of reconnecting to the ways that your body can move.

[00:12:43] Cheryl Crow: I have a friend who has a spinal cord injury. She’s never unless there’s a big medical advancement, she’s not gonna be able to dance the way she used to. But now she’s joined like a dance a wheelchair, you know, accessible dancing group and still like discovering ways she can move her arms.

[00:12:59] Cheryl Crow: Just [00:13:00] that kind of mentality of adapting and leaning in to what you can still do is just beautiful.

[00:13:05] Cheryl Crow: But yeah, let’s do that activation syndrome story. Tell me about the, what age were you at? ’cause I’m trying to get your timeline clear in my own head too. And what, yeah. 

[00:13:14] Cheryl Crow: So what did that feel like?

[00:13:15] Zac Spinosa: So, , like I, I said so far we started 15, we’re at 21. I’m opening my gym, right? I open my gym at this point, I’m almost in medical remission where I’m weaning off my medication and it gets to the point where I’m completely off medicine. So I’m two years into opening my gym, to owning my gym. I’m 22 and a half, 23, and now I’m off all meds.

[00:13:35] Zac Spinosa: I have zero arthritis symptoms. Obviously, I still have my fusion, but my pain levels are pretty much completely taken care of. So my health and lifestyle has been incredible. I’m training martial arts, i’m training weights, I’m training people. My business is doing well.

[00:13:49] Zac Spinosa: And you know. I’m a pretty driven person and I want a lot out of life and I always wanna do more. So having a 600 square foot gym for me wasn’t enough. So I [00:14:00] slowly expanded to 1800 square feet and then that wasn’t enough. So I said to my dad he’s a bakery, he is owned a bakery his whole life.

[00:14:07] Zac Spinosa: The guy worked harder than anyone ever, and he’s instilled a lot of my values into me, of course, and I wanted to give back to him. And I knew he wouldn’t be able to afford the property that he wanted, which would be, you know, a country farm, nice view, so we can just relax and retire eventually. And I knew I wouldn’t be able to afford those things.

[00:14:25] Zac Spinosa: So I said to him and my brother, I was like, why don’t all three of us sell the property we currently have? And we go and buy this old, decrepit farm property and build ourselves a future where my dad, our dad can retire and we can build our businesses even bigger. So we bought this 20,000 square foot warehouse farmhouse type thing with 97 acres and we start building my gym.

[00:14:47] Zac Spinosa: So this is at 24. This is in 2021. COVID still kind of lingering there. . So my gym was closed multiple times, but because I trained professional athletes, I was allowed to stay training, which was pretty cool. But [00:15:00] during all this time, my health is at the best it’s ever been.

[00:15:02] Zac Spinosa: I’m 205 pounds jacked. I was like, oh my God, I feel so great. My business is doing well, my family’s great. We just got this new project. Everybody’s so excited. We’re doing all the construction ourselves. So like I said, it’s a decrepit farm property, so dirt in my barn had to pour pads, ripping wood out, doing a lot of construction on top of all these things.

[00:15:21] Zac Spinosa: So I’m putting my body through a lot of physical stress, which I’m sure probably contributed to what was to come in the near months. So obviously the vaccines had rolled out at this point.

[00:15:32] Zac Spinosa: And immediately after being vaccinated, I had an arthritis flare, like very bad one. First one in first that as bad as it was like I couldn’t walk again. I couldn’t barely put on my clothes again. And that lasted about two weeks before I got put back on biologics and as soon as I got put back on biologics it felt amazing.

[00:15:51] Zac Spinosa: I like, okay, I’m good. Life is back to normal. Let’s focus again. It’s gonna be okay. Fast forward two weeks. I’m [00:16:00] watching a show on my bed, I’m soaked in sweat and I’m like, what is going on? This is weird. And I was like, all right. I was also with a lady and she is talking about man colds and how men are babies when they get cold.

[00:16:12] Zac Spinosa: So I was like, i’m fine. Oh, I’m fine. So I played it off like it was nothing, right? And which is not anybody’s fault, but it’s just funny ’cause like of course I’m gonna be like, I’m good. I’m just sweating, whatever. 

[00:16:24] Zac Spinosa: The next day I wake up, I’m 13 pounds lighter, and I’m like, uhoh, why am I 193 pounds or 192 pounds? This is not good. And I go to the hospital instantly, they put me on fluids and they’re like, you’re jaundiced. Something’s wrong. Do you take steroids?

[00:16:43] Zac Spinosa: And I’m like, steroids? What? I’m like, why? They’re like, do you do drugs? Do you do steroids? Like you’re a fitness guy. We see you have muscle. Are you on steroids?

[00:16:50] Zac Spinosa: I’m like, I’m not on any drugs. I’m not taking any PDs. So they’re like, mom, dad, do you guys mind leaving the room? I’m 24. They’re like, trying to get me to admit it. Are you afraid to speak in front of your parents? [00:17:00] I’m like, no, I’m not on drugs. What are you talking about? Your liver is failing.

[00:17:03] Cheryl Crow: They knew though, that you had systemic juvenile idiopathic arthritis, right? 

[00:17:08] Zac Spinosa: Yes, but the hospital I was at was not like by any means a good one. It’s getting torn down. Great people, good staff and everything, but in our healthcare system’s, kind of wild here. But I spent two weeks in this hospital and they were trying to figure out what was going on.

[00:17:24] Zac Spinosa: Nobody knows what’s happened. They just know my liver’s failing. They do a liver biopsy, but they had to go through my jugular. They did a skin biopsy. They’re doing all these different things and I start bleeding profusely outta my nose, outta my neck. They didn’t even stitch my neck up after they did the biopsy and I’m on blood thinners and I’m bleeding everywhere.

[00:17:41] Zac Spinosa: And within two weeks I was unable to walk. So I was running to the bathroom because I was on some type of laxative medication as well for whatever they were trying to treat me for. And then now I’m in a diaper and I’m 24. I’m like, what the hell is going on? It’s COVID so there’s no visitors allowed besides one at a time.

[00:17:58] Zac Spinosa: So my mom’s with me the whole time, which is [00:18:00] great, but like it’s terrible on her. Her health took a big hit because of it and now I’m in the ICU, i’m crashing. Things aren’t good. What are we gonna do? My doctor, the one I talked about earlier and the podcast, he is losing it on the staff and he’s trying to advocate for me to get me to sent to a specialist hospital in Toronto.

[00:18:19] Zac Spinosa: So finally they listened to him. They send me by paramedics in an ambulance to Toronto. It’s an hour and 45 minute drive. I remember the drive, it was raining. I’m asking if I could have fluids and the lady’s you can’t, you’re only about 500 milliliters a day. And I’m dying because it, my sodium mobiles were so off that if I drank water, I would drown or something.

[00:18:38] Zac Spinosa: And I remember how crazy it was ’cause I was like fading in and out of like consciousness. I’m gonna ride there and now it’s 20 days into being in a hospital. I’m in a different city. I don’t know anybody, obviously I’m not like I’m going anywhere, but I’m in a bed and I have 13 different doctors asking my age, my, my [00:19:00] name, where I’m from, what I’m doing.

[00:19:02] Zac Spinosa: And I’m like, why do they keep asking the same questions? What I’m not realizing is they’re doing a cognitive test on me. They have a neuro neurologist here. They have a oncologist, they have every different type of doctor specialist working on me on this one specialty floor.

[00:19:15] Zac Spinosa: Now I find out my kidneys are failing and I’m like, what the hell is going on? They weigh me. This is my third week in the hospital. And like I said, I was 205 pounds. The day I got in, I was 153 pounds. At this point, I’m like, what the hell? Three weeks in another week goes by, I’m 127 pounds, and now I can’t even get outta bed to weigh myself.

[00:19:35] Zac Spinosa: And they, the one nurse wasn’t paying attention. She tried to weigh me and I fainted. Luckily I hit my head on the bed and I got up. They put me back in the bed and I remember every day is going bad by, it’s getting worse and worse. And I’ve always been like a relatively positive guy for the most part, but I’m getting like scared, right?

[00:19:54] Zac Spinosa: I’m like, what the fuck is happening to my health? I’m seeing my mom. She’s losing her [00:20:00] like her strength, right? Like her protective shield that she’s put on. Like we’re watching our Netflix shows together just to go through the days and she is just hurting. And I’m sure I’m my mom’s baby, right? So for her, she’s holding my hand, she’s like crying and then she’s trying to get it together.

[00:20:16] Zac Spinosa: And my dad, like I said, he is a tough dude, but he can’t be there. And he comes and when he is coming, one of the nurses says to me, Hey, we’re not supposed to tell you these types of things, but like we know how close you are with your family and your dad, and we got a note from your doctor that it’d be important for you to know where you’re at with your health and that you’ll handle it.

[00:20:36] Zac Spinosa: I’m like, okay, what does that mean? But obviously I’m all fucked up. They’re like, this might be the last time you see your dad. So you should tell ’em everything you want to tell ’em and I’m like, holy fuck. So it turns out I have 30% chance to make it out. This, at this point I’m down to below 130 pounds, anywhere between one 20 to one 30.

[00:20:55] Zac Spinosa: I’m completely like dying. They dunno. 

[00:20:57] Cheryl Crow: What, how tall are you? Just to paint a picture. 

[00:20:59] Zac Spinosa: I’m six one. [00:21:00] 

[00:21:00] Cheryl Crow: So I’m for those who watched me on social media, like I’m five five and 120 pounds. So you being six one and a little over 120 pounds. That is from going from 180. 

[00:21:13] Zac Spinosa: I’ll send you some photos too so you can see it.

[00:21:16] Cheryl Crow: I’ve seen them on your website. I’ll definitely post those because I’m just, I’m so, this is so traumatic. I’m so sorry. Just thinking for you.

[00:21:25] Zac Spinosa: . No I always know if I’m doing a pretty good job telling the story if people look sad, so it’s, yeah, because it’s real, right?

[00:21:30] Zac Spinosa: Because I chalk it up sometimes because I’ve been through it, it’s okay now, but. It’s a real thing that can happen to these young kids that have JIA and stuff, right? So, yeah, so at this point I’m telling my dad, I’m holding his hand and he is like, just getting angry. He’s you’re not gonna fucking die.

[00:21:45] Zac Spinosa: He’s we got work to do, you’re okay. You’re gonna be fine, stop talking like that. But I’m like, I know, but it’s like I need to say these things. So I gave him like a note for like my little sister who was like, she was eight at the time, my brother. These things, I’m a very family oriented guy.

[00:21:59] Zac Spinosa: So for [00:22:00] me it was like that was the worst thing ever. And I’ve always wanted kids so bad and I’m like, I can’t believe I’m not gonna be a dad. This is like the worst feeling ever and I remember all these doctors are saying to me like, if you recover, it’s gonna take you years to be yourself again.

[00:22:14] Zac Spinosa: It’s gonna take you forever. And which I get, they’re being honest, right? Because the average person would have a really tough time with recovering from that disease and what I went through. But luckily, one of the doctors guessed macrophage activation syndrome and it was like a Hail Mary.

[00:22:30] Zac Spinosa: They started treating for it. It was a specialized medication anakinra that, it’s a biologic as well that helps heal liver kidney function. They got me on it and I was taking four of these needles twice a day and within three or four days , oh, I didn’t even mention this. I had fever this entire time and I wasn’t able to drink water or fluids or eat.

[00:22:52] Zac Spinosa: So I’m just sweating every day having fever dreams. It was such a horrific experience when it comes to those things. I literally [00:23:00] was hallucinating. It was terrible. And so, you know, luckily I got out and I remember the first day in, like where I was out of this bad slump in the hospital, they said, all right, we’re gonna get the physios here to get you walking.

[00:23:12] Zac Spinosa: And I’m very like, I wanna do it myself, type of thing. And they were talking about walkers and this, and then I grabbed the walker. I did it. I took I think five steps and my mom took a picture of it. And literally right after that picture, I like hit the walker over out of like frustration.

[00:23:28] Zac Spinosa: And I was like, mom, come here. I don’t want this fucking walker. I’m gonna do it myself. Right? And I just grabbed her shoulder, I’m like shuffling in my bench slippers from Walmart in my robe. And they’re like, okay, you can only walk five minutes at a time. So I told my mom, Hey I know this really cool spot. It’s cool over there, because I was warm.

[00:23:43] Zac Spinosa: She’s like okay, we go to the stairs. And I said to my mom, we’re walking up these fucking stairs. Okay. Right? And she’s like Zac. She’s like, Zachary, no. 

[00:23:52] Cheryl Crow: As an occupational therapist, I cannot condone this approach, however, you’re an unusual individual, so it clearly works for you. 

[00:23:57] Zac Spinosa: Yeah, no, I know. I know. You’re probably like, [00:24:00] you’re like screaming, what’s wrong with this guy? Yeah, but I was like, we’re going the stairs, we’re doing five sets up the one little flight. It’s eight steps, it was the hardest eight steps of my life. I’m not joking like it was, I had no strength, right? I’m 120 some odd pounds like my, I haven’t even been on my feet in three and a half weeks or so. It was crazy.

[00:24:18] Zac Spinosa: And I remember every morning I would look forward to my everything bagel with cream cheese. That was, my mom would bring that to me from Tim Hortons and the one day she couldn’t bring them and my brother was visiting.

[00:24:27] Zac Spinosa: I call him like, Hey, when are you coming? He’s 11:00 AM like, what do you mean blood works at five? You gotta be here for six with my bagel. And I’m not even joking, I was so angry at him. ‘Cause it was like the only thing I looked forward to in my day was this frigging bagel, because I’m stuck in bed and I had my routine, right? It became, that’s my, like that was the most important part of my day.

[00:24:45] Zac Spinosa: So I asked one of the nurses, and this is the thing about belief, right? And finding purpose in things. I said to my nurse, I need my bagel. I’ll give you a hundred dollars if you can go get my bagel. And she’s you don’t need to pay me. I’ll go get it. That’s so funny [00:25:00] and then she comes in my room when she’s supposed to bring it. She’s I’m so sorry Zac, we’re so busy I can’t go. But she’s not my nurse. So she’s if you want, you can go get it. And I’m like, what do you mean? But I’m not supposed to leave my bed. She’s you just have your post.

[00:25:14] Zac Spinosa: You just like when you go to the washroom. I’m like, oh yeah. Like when I go to the washroom, I was going to the bathroom in the bedpan for two weeks. I’m like, oh true. So I grabbed this thing and I just walked and I’m like walking aimlessly. And I remember that Silk Sonic album by Bruno Mars and Anderson Pax just came out and I just kept listening to it on repeat.

[00:25:31] Zac Spinosa: And I was like, I felt like I was in a movie. I go to the elevator, I go down and I bought three bagels, ice coffees, ice caps, donuts, all this stuff. And it was, I remember, I was like, I’m gonna make it. Like I, that’s how I was, like, I’m making it. I’m gonna live. I’m gonna live. And I was so excited. And then from the next day I’m like, I wanna be discharged. I want out of the hospital, right? And like it was actually seven days after that they got me out and I was able to go home.

[00:25:58] Zac Spinosa: And of course there was a [00:26:00] lot of other troubles that I had to face from that because the recovery process was so hard. And I fought every single day to get a ounce of myself back.

[00:26:09] Zac Spinosa: It got to a point where it was unhealthy and I was fighting so hard to become who I was before that. I was losing myself and I was getting sick. I was falling, hurting myself. I like crapped my pants deadlift one time, not even joking because I pushed myself too hard. And then my appendix burst, like I said earlier, and that was when I got a reality check okay, you’re not gonna win back 13 years of hard work in three months.

[00:26:32] Zac Spinosa: You have the skills, you have the knowledge, you know what you got to do. You just have to be patient and you have to give yourself some grace, which is something I’ve never really done. So it gave me a new perspective of okay, I should just be happy that I’m here. I should be happy i’m able to continue moving on.

[00:26:47] Zac Spinosa: And it showed me how devastating arthritis could be. Like I’ve never, I’m sure many people watching this had no clue that this type of stuff could even happen. I didn’t and I thought I knew a lot. Yeah. Sorry I’m talking so much. 

[00:26:58] Cheryl Crow: Oh no, my, no, [00:27:00] you’re so funny. That’s how I am when I’m on a podcast. But then the people are like, you’re literally like, we invited you to talk.

[00:27:06] Cheryl Crow: That’s why you’re on the podcast. No, but I know what you mean. First of all this is just a really powerful story. I feel like you need to like be a spokesperson for “everything bagels.” And this dude was so motivated, he against medical advice, went down, down to get the bagel.

[00:27:22] Cheryl Crow: No but but on the more serious note. I do like to sprinkle in you know, evidence in evidence and scientific kind of citations. So, macrophage activation syndrome is, actually occurs in 10% of children with systemic JIA, which as you said, so JIA is juvenile idiopathic arthritis.

[00:27:40] Cheryl Crow: There are, it’s an umbrella term, just like arthritis as an umbrella term for a bunch of different conditions. So systemic JIA is the most serious type. It’s the most similar to adult rheumatoid arthritis, and it is the one that has this 10% risk of developing macrophage activation syndrome.

[00:27:59] Cheryl Crow: Yeah, I know [00:28:00] it’s Monday morning quarterback, but I do feel like in your case I mean, I went to this camp this weekend and literally it was the first presentation that a pediatric rheumatologist gave to the parents is you know, basics. It was called JIA 1 0 1 and it was like, hey, we don’t wanna scare you, but like this is something to look out for if your kid suddenly develops high fevers suddenly has this stuff like look out for macrophage activation syndrome.

[00:28:24] Cheryl Crow: So it’s possible too that just in different parts of the world that’s more rec recognized in others, but but you know, it does.

[00:28:30] Zac Spinosa: Rare that I got it at 24 as well, which is weird. Yeah. 

[00:28:33] Cheryl Crow: Well this is where it also gets confusing because I think you carry that, you actually carry the diagnosis into adulthood. So, and the reason they actually changed the name from juvenile rheumatoid arthritis to juvenile idiopathic arthritis is to help providers and that doctors understand that these actually are two different illnesses.

[00:28:53] Cheryl Crow: For example, adult rheumatoid arthritis much more rarely affects the jaw. Juvenile osteopathic [00:29:00] arthritis often affects the jaw, stuff like that. And juvenile idiopathic arthritis, whether it’s systemic or not, is actually statistically more likely to go into remission in adulthood than adult rheumatoid arthritis.

[00:29:11] Cheryl Crow: Like I was diagnosed with adult RA at 21. So even though like I was only, let’s say someone else got diagnosed with JIA at 18, only three years difference than me as an adult, but they, I am much less likely to achieve remission just statistically.

[00:29:26] Cheryl Crow: But yeah, macrophage activation syndrome is just, and I’m looking at it online to make sure I say it right, but it’s basically when it, your innate immune system becomes overactive. And it can just be spontaneous, it can be in a result of, sounds like no one knows for sure, but it could be a result of, you know, your disease being more active and your body’s trying to, you know, fight itself.

[00:29:46] Cheryl Crow: And I really, I wanted to go to the point that you were starting to make at the end of your story. Which I think is so, I’m glad you made that point, ’cause I also, I don’t want people to get the sense that everyone should go rogue or against medical advice and like just be like -“mind” – because “mind over [00:30:00] matter” is helpful to a point. But we do have physical limitations and again, that thin line between delusion and optimism.

[00:30:09] Zac Spinosa: For sure. I totally agree with what you’re saying. 

[00:30:11] Cheryl Crow: How did you find that like, ability to accept the need to, you know, you had to learn to pace yourself and learn that it give yourself some grace. 

[00:30:20] Zac Spinosa: Yeah. Well, it was just kind of forced upon me by what was happening in my life, right? Like I was seeing my own relationships with my family and like my partner and all these different things kind of just shifting in a negative way because my intensity of trying to make myself who I was before was not a healthy way of doing it.

[00:30:39] Zac Spinosa: And, you know, I went to see my rheumatologist, it was a good friend of mine now, and he is like, Zac, like you’ve done the impossible seven or eight times. Like once in a while, go on a vacation, have a drink, you know,? And he’s not for alcohol, just relax, because your cortisol levels are so outta whack because you’re putting so much pressure on yourself that you’re now, you’re not helping yourself.

[00:30:59] Zac Spinosa: Like you’ve [00:31:00] said that going rogue and doing things your own way to make it better can only work if you’re in a good spot, like with your homeostasis and your stress levels, all these different things. So I came to the conclusion that I wasn’t enjoying anything. I was just trying to get to the end result, which was feeling who I was before, where now, four years later, almost now, I feel the best I’ve ever felt.

[00:31:23] Zac Spinosa: I have the most purpose. My body’s the best it’s ever been, both physically and like spiritually. Everything is back in alignment. And if anything, I’ve made it past where I thought I even wanted to get to, and that was because I took that time to realize this.

[00:31:35] Zac Spinosa: And I do wanna jump on that point about, you know, not relying solely on your own abilities. Because I was, when I was younger, I was like anti-medicine because of course I didn’t wanna be on it. I didn’t wanna get needles anymore, of course, which I totally empathize with. But it’s a very ignorant way of looking at things. You have to look at everything as a tool.

[00:31:54] Zac Spinosa: I’ll never say that if you do strength training, you’ll never need medicine again. That’s a silly thing to say. [00:32:00] But you should utilize your rheumatologist or your specialist, the medication that you’re given, your treatment plan, and then your lifestyle as a team and not as one’s better than the other.

[00:32:11] Zac Spinosa: It should be working together to create the lifestyle and the treatment plan that’s going to work for you, right?

[00:32:17] Zac Spinosa: I’m sure you’ve heard it many times, especially nowadays, people have lost a lot of trust with doctors and medications. And I think it’s unfortunate because, just because of some political thing that did happen a few years back, that was way after all these biologics came out.

[00:32:32] Zac Spinosa: That was way after all these amazing medicine and treatment plans came out, and doctors have been helping people for hundreds of years, right? So we should still have trust within our medical systems and with our doctors and our healthcare professionals because they do want to help you, right?

[00:32:46] Zac Spinosa: They’re not gonna get it right every single time. And it sucks, but it’s human error. It’s life, it’s gonna happen. You have to just try again. If this medication plan doesn’t work for you, it’s okay. Next one will come and the next one will come, and then we’ll find what [00:33:00] works for you, right?

[00:33:00] Zac Spinosa: I don’t ever want to discredit doctors or medications ’cause I think that’s an ignorant thing to do as somebody who is healthy now because I got lucky, I got the right biologic on the first try after three other medications didn’t work. That’s amazing. I’ve met a lot of young kids that went through five, six different biologics and they finally found the one that worked and then seven years later it doesn’t anymore. So it’s tough, but it’s the reality of this thing, right? 

[00:33:24] Cheryl Crow: Yes. You’re a hundred percent speaking to one of my most favorite soap boxes.

[00:33:30] Cheryl Crow: Those who’ve listened to a lot episodes know, that, yeah, I think the synopsis for me is it’s not either or, it’s both and. It’s very statistically rare, particularly for adult rheumatoid arthritis to experience a prolonged unmedicated remission. That’s just the facts.

[00:33:47] Cheryl Crow: So you may experience a prolonged unmedicated remission and that’s great, but just know that for me, that’s not a meaningful goal to, for me personally, because I have a lot of risk factors that make it like clear that most [00:34:00] likely statistically I will be on medications the rest of my life until there’s a cure.

[00:34:03] Cheryl Crow: Or unless there’s a cure. Yeah. And I have literally no problem with that. ’cause they work, you know? 

[00:34:07] Zac Spinosa: . If it’s not changing your lifestyle, who cares, right? Like it’s a needle prick here and there and it is what it is. But once again I know people hate hearing like it could be worse, but really, it really could be right there.

[00:34:17] Zac Spinosa: There’s diabetics that have to do their insulin 3, 4, 5 times a day. That is inconvenient. You know what I mean? So just be thankful that you’re still here and you still have the choice to, to move forward. Right. But I do wanna get into the strength training side of it.

[00:34:30] Cheryl Crow: Yes, go for it. Yeah. Why is strength training so important? We’ve had a few episodes on this, but you know, I never know if people are listening to the back catalog. So go ahead. 

[00:34:38] Zac Spinosa: It might be different. Right. And here’s a presentation that I want to give to you.

[00:34:41] Zac Spinosa: And I met with my rheumatologist and I spoke to a few other rheumatologists over the weekend about this and in my way of thinking it was my theory. And like I said, I’m just a personal trainer, strength coach who has lived with arthritis and has utilized this for myself and honestly, I’ve worked with 50 or 60 different people with RA JIA and everything.

[00:34:59] Zac Spinosa: And this system [00:35:00] has worked and it’s not because of the what I’ve done, but it what it is that we’re doing. I think that is the most effective part, is if we break down what arthritis is and the symptom of it, it’s inflammation, chronic inflammation, and that is not a good thing, right? It hurts. It causes pain, immobility, all the shitty things you could think of.

[00:35:19] Zac Spinosa: But then we talk about strength training. Like Zac, you always say strength training, I get it. What is that? Short term inflammation. So why would that be good for us? It doesn’t really make sense. It doesn’t sound like it makes sense, right? And it hurts. It does hurt and it’s uncomfortable for a lot of people, especially people suffering with flareups or have their arthritis.

[00:35:38] Zac Spinosa: But it does something that we don’t realize. So to build your bone density, especially for women, when you’re going through menopause perimenopause, the only way to do it is through heavy strength training, one to five rep range. That’s that’s not easy to do right away, but eventually you’ll get there by following a process.

[00:35:54] Zac Spinosa: But when we’re strength training, we’re exercising, we’re creating short-term inflammation. Your body creates [00:36:00] an adaptation to that short term inflammation that creates muscle growth, tendon growth, ligament joint integrity, bone density, all these different things. But not only is it doing that, it’s also getting more efficient at dealing with that short term inflammation.

[00:36:14] Zac Spinosa: And over time, while you become more efficient at dealing with the short term inflammation, your body’s homeostasis level of dealing with inflammation improves and improves. And if not, day in and day out, it’s month year and I’m at 14 years of strength training. My ability to recover from inflammation is significantly better than 14 years ago. Right? And that wasn’t because of an accident. It was by design. A design I didn’t even know existed, but it happened, right?

[00:36:43] Zac Spinosa: So when we take on people I’m working with a girl right now, she’s 16. She wasn’t able to squat, she wasn’t able to hinge, she couldn’t do anything severe pain that her mom was showing me, her MRIs and the amount of damage.

[00:36:55] Zac Spinosa: And it was terrible. And I said, amazing. This is terrible. [00:37:00] Go have a coffee at my brother’s coffee shop next door and I’m gonna work with your daughter and see what we can do. She was actually up to take a as well. And I took her daughter and I just kind of gauged how she was feeling both mentally, physically.

[00:37:12] Zac Spinosa: And I told her this, what I’m saying here in a much simpler way, in a more kid friendly way. And Danny the girl was like, I’m ready to go. Let’s do this. And I showed her how to use her body. How she could, she has a little ankle fusion. So I added a high heel elevation to allow her to bend her ankles with a little bit extra help passively, right?

[00:37:33] Zac Spinosa: And because of this, she was able to squat to full depth with no pain. And she was, not only was she like excited, she was blown away, which then made her believe, oh my God, I could do so much more. And now, this was three weeks ago, four weeks ago now, and this girl went from having a hard time getting her in and outta bed.

[00:37:53] Zac Spinosa: Like sometimes showers were tough. She had to call off work as a waitress because she was like I just can’t do it. It’s hurting. She like, she’s calling me like, [00:38:00] Hey, can I exercise more? Can I do more? And I’m like, that’s amazing, but let’s just stick to the plan. Let’s stay smart with it. Now she’s squatted with 65 pounds in her hands all the way down and up pain-free.

[00:38:12] Zac Spinosa: And she says her overall day-to-day knee pain is almost completely gone. It went from eight to two out of 10. Wow. Her hip pain is completely gone and she had some lower back stiffness and tightness. And I think that was just from lack of movement to be honest with you. And now that’s gone as well.

[00:38:27] Zac Spinosa: And that’s just three weeks. And I’m not saying it’s gonna be like that for everybody, but the stronger you have, the more armor you have, and the more you can, you know, strengthen your body, the easier it will be to fight off these issues and the easier it’ll be to function day to day. Right. So the other part of my macrophage activation syndrome, the doctors all had said to me, you came in here with so much muscle mass that it, your body was able to utilize that and eat away at that while it gave us enough time to figure out your diagnosis to save your life. So if you came in here unhealthy, eating like [00:39:00] crap, drinking, not exercising, you would be dead. You would not be alive. So that’s something that, that I’ve realized I’m so thankful for whether you have chronic pain or not.

[00:39:09] Zac Spinosa: Everybody should be strength training. Women should be strength training. If they want to reduce their chances of osteoporosis with menopause, it’s the most important thing you should be doing. And we’re not talking six days a week screaming and curling in the mirror. Just four different movement patterns per day, two, three days a week for 60 minutes.

[00:39:27] Zac Spinosa: So much can happen. So that’s my presentation. 

[00:39:30] Cheryl Crow: I love it. No, I mean, I’m like nodding enthusiastically. This is an audio medium. So for those not watching the YouTube, we’re not, I’m nodding and I think you explain beautifully that I think there are, I’ve mentioned there’s many paired, in other episodes, there’s so many paradoxes for having autoimmune disease and especially rheumatoid arthritis.

[00:39:50] Cheryl Crow: And one of them is that short say that you are supposed to listen to your body. But sometimes, like for [00:40:00] fatigue, I’ll say for me. It I think no one, none of the doctors and none of the physical therapists and physiotherapists I’ve ever talked with or personal trainers can really, no one has a consensus on why this happens, but there’s a clear pattern that when people consistently engage in exercise, people with RA and other forms of inflammatory arthritis their fatigue levels significantly go down along with pain. And you’re thinking, okay, pain makes sense from like a mechanical perspective. Your muscles are stronger and your tendons are stronger. You’re supporting the joints. But why would fatigue get better? It’s this irony or the paradox that you have to sometimes expend energy to gain energy.

[00:40:38] Cheryl Crow: Right. And we, 

[00:40:39] Zac Spinosa: yeah, 

[00:40:40] Cheryl Crow: and one of the, one of the method mechanisms is that you’re moving more efficiently, right? Your body’s not as exhausted ’cause you have a strength to help you move. But I have a little theory, and this is totally armchair theory, but I think, I feel it’s not just physical fatigue. Oh, I feel like I need to take a nap.

[00:40:56] Cheryl Crow: When I started strength training, there was a distinct improvement in my [00:41:00] cognitive function like and it’s, I have, I don’t know exactly what’s happening, but I feel like some, the blood is flowing better to my brain. That’s my theory.

[00:41:08] Zac Spinosa: Yeah. Well there, there was a study out of an Australian university that was showcasing that physical exercise, strength training in particular was more, 98% more effective than the leading SSRIs for mental health.

[00:41:22] Zac Spinosa: You think about that side of things, being depressed and scared and anxious about your pain and your disease completely can debilitate you physically as well as the disease itself. Right. So I agree with your armchair theory, because I have the same one where it’s when you’re expending that energy, and not only are you getting stronger, which is a physiological trait, which is awesome, but your mind is getting stronger, your belief in yourself is improving, and your ability to take on hard things and do hard things gets better. It’s I own a business. Problems happen all the time, you know?

[00:41:56] Zac Spinosa: Things are gonna happen. My first four years of it, I was [00:42:00] stressed outta my mind. Now, if somebody steals one of the treadmill magnets outta the gym, instead of me getting angry and punching a wall like an idiot, I look at one of my employees, they say, okay, somebody go to Canadian Tire. 10 bucks. The problems solved.

[00:42:13] Zac Spinosa: You get better at dealing with this stress and your body through exercise is getting better at adapting to pain and to, to becoming more tenacious, which in essence would become more efficient at dealing with that. And that’s why that fatigue in my mind, is getting reduced. 

[00:42:29] Cheryl Crow: Yeah, that’s a really good theory, and I do wanna be clear that I think all, anyone who’s looked into the evidence for exercise in rheumatoid arthritis, it’s very clear that there is, there’s a positive relationship between cardiovascular and strength training and reducing pain and fatigue, improving emotional, you know, coping. It’s what we don’t know is exactly, precisely exactly why and how as opposed to a TNF inhibitor.

[00:42:57] Cheryl Crow: It’s like we can see the little cell going in there and be like, it’s [00:43:00] inhibiting you. Yeah. But I did wanna share that, just to support your points. In 2022, the American College of Rheumatology put out the first ever integrative health guidelines for rheumatoid arthritis. And it’s the first time a professional association has put one out. And integrative just means non-pharmaceutical in this case, or non-pharmacological. And the only mo the most strongly recommended intervention of all the interventions they looked at everything from chiropractic massage strength training, occupational therapy, physical therapy, all the different diets. The strongest recommended intervention was consistent engagement and exercise like. That’s beautiful. The top of the list also in 2023, eular, the European League against Rheumatism. These are really important pointers for like clinicians who might be like, sometimes you need to like cite evidence.

[00:43:53] Cheryl Crow: Well, a, in to know what you’re doing. Yeah. Important. But also to like in, to say to insurance companies in the US at least, [00:44:00] we’re always having to fight, Hey, this patient needs more visits. You should cover this because Eular put out the first ever it’s a rheumatology association in Europe put their first ever guidelines about fatigue, the management of fatigue in rheumatic and musculoskeletal diseases.

[00:44:14] Cheryl Crow: And guess what? One of the recommendations is exercise. You know, and they did say specific you know. Programs that are developed in conjunction with a trained, like physical therapist if possible. But obviously in your case, you know, someone with an e expertise of in their lived experience and expertise as a personal trainer can be worth the weight in gold.

[00:44:35] Cheryl Crow: So I’m just, again, sprinkling those evidence tidbits into there, to say that we’re not just speaking from like anecdotal evidence. This is like replicated in multiple studies why this is so important. 

[00:44:46] Zac Spinosa: Oh yeah. It’s incredible When I have people with arthritis come in and they have MRIs done, or they have a, like all these different scans done on themselves and then they work with us, let’s say six months.

[00:44:55] Zac Spinosa: I have a team that work under me now as well. They all follow the same modalities of training. I [00:45:00] have physios as like colleagues that I’ve ask for help if I ever am in a PICC when I don’t fully understand something. And they come back with their skin six months later and it’s like they’re seeing such incredible in increases with their joint integrity, their bone density has improved, right?

[00:45:14] Zac Spinosa: Their muscles are way bigger and way stronger, and their pain is gone. Or it’s so low that they’re not even worried about it anymore. Right? So obviously I’m extremely passionate about it and it sucks ’cause I seem biased. ’cause I sell fitness as a living. I believe so wholeheartedly in it.

[00:45:31] Zac Spinosa: And there’s a reason we don’t do group training stuff here. We don’t do boot camps because obviously those are fine modalities of community fitness, but they are not the things that are gonna make the significant impact in your overall health and wellbeing. So for my own integrity, I don’t sell those things.

[00:45:46] Zac Spinosa: So I’ve always, within fitness and within my brand, have been so high about integrity and it’s a missing thing in many spaces. Now, of course, I’m sure you know all about that. And it’s amazing to see that strength training’s finally getting the [00:46:00] love it deserves and it’s what people need and what they should have.

[00:46:03] Zac Spinosa: And remember 50, 60 years ago, the majority of people’s work, the workforce, they were in physical labor where whether it’s strength training or not, if you’re lifting an engine at General Motors by hand and helping move it, you’re building strength and you’re building bone density up just through your daily life activities, right?

[00:46:20] Zac Spinosa: Like our body doesn’t know we’re in the gym. It just feels the stimulus. And that’s why we didn’t have such high amounts of problems. Obviously back then we didn’t have the medications so people became more disabled and crippled by the disease itself because they didn’t have incredible things like biologics, but like you said, the integrative side of things was just more built into our lifestyle. 

[00:46:41] Cheryl Crow: Yeah, it was, this is such a little anecdote, but when I, we went to Disneyland, this is like now a couple years ago, but I remember I was like having a little bit more joint swelling and pain than usual. I’m kinda like you had usually is around like a, for me it’s like usually around two or three.

[00:46:54] Cheryl Crow: It’s not that bad, but I was like, oh shoot, we’re gonna be walking a lot. And I was like, I hope I’m gonna be okay. [00:47:00] And I noticed each day we were there, even though I was wa I was walking so much, I was like, oh, I shouldn’t be surprised by this. I was feeling better and better each day. And I was like, oh, right.

[00:47:08] Zac Spinosa: Yeah, because you got used to it. 

[00:47:09] Cheryl Crow: Motion is lotion and you know, I’m getting the joints moving, but I’m really glad you said the thing about it’s true that when you are first getting in shape, you will typically be feeling a little worse for a couple weeks. I know like on episode one 17 I talked to a physical therapist, Dr. Steinberger, and she said she has a clinic for people with arthritis in up in Maine. And she said, she gets, tells our patients, just give me at least two weeks. Give it two weeks. You might be feeling worse for two weeks and then start to feel better slowly. So know that. I actually just had my first personal training session in three weeks because I’d been traveling and even though I’ve been doing a lot of walking other things, I hadn’t been staying up with my home program, which I know I should do.

[00:47:52] Cheryl Crow: And I was feeling last night like, oh yeah, my joints feel worse, but I’m like, this is normal. This is part of I’m getting back into the routine of my strength [00:48:00] training. You know? So don’t, I think a lot of people give up ’cause they start it, they try it once or twice and then they feel worse and then they don’t wanna keep doing it. 

[00:48:07] Zac Spinosa: the first week of training for everybody is absolutely horrendous. Like it feels like if you aren’t even a person with a disease and you work out and especially if you do too much on your first workout, it’s terrible. Like we take people through squatting, benching, deadlifting, and then some sort of pull down or a row, and that’s all we do two sets of that on everybody’s first time assessment.

[00:48:28] Zac Spinosa: And people who are in good shape come in, they’re like, oh my God, I can’t walk. So it’s like you have to be a little more intelligent with your approach. ’cause no matter what, the first few days of it are gonna suck, but your body adapts so fast and that’s why it’s so beautiful to see this adaptation and protocol with strength training becoming more pushed by the rheumatologists and the physios out there.

[00:48:47] Zac Spinosa: So it’s been it’s been really cool for me to see. 

[00:48:51] Cheryl Crow: Yeah. Well, you’re doing amazing work and I have a few rapid fire questions if you have time. 

[00:48:55] Zac Spinosa: Yeah. 

[00:48:55] Cheryl Crow: Okay, perfect. 

[00:48:55] Zac Spinosa: Let’s do it. Yeah.

[00:48:56] Cheryl Crow: I think I could maybe anticipate this, but what are some of your best [00:49:00] words of wisdom for people who are newly diagnosed with inflammatory arthritis?

[00:49:05] Zac Spinosa: That’s so tough. A few words. You should focus on three different things. I think three words, maintain belief, get strong and believe in perseverance. Have perseverance in you. Tenacious. You have to be tenacious. Like these are the things that you need. 

[00:49:21] Cheryl Crow: I love, I actually thought of the word tenacity.

[00:49:24] Cheryl Crow: I was like, that’s, I’m always thinking about episode titles and I’m like, I feel like we have to put tenacious in the title. ’cause that’s really, that If you could rename your gym, it could be like tenacious gym. Yeah. 

[00:49:33] Zac Spinosa: We’re forged. Right. Because it’s about building yourself. It’s about creating something.

[00:49:37] Zac Spinosa: Right. So, yeah. 

[00:49:38] Cheryl Crow: Oh, that’s easier to say. So that’s even better. Yeah. Forging person. Okay. I’ll fi I’ll figure out a title. Yeah. 

[00:49:42] Zac Spinosa: I love it. 

[00:49:43] Cheryl Crow: Forging, tenacity. 

[00:49:45] Both: Love it. 

[00:49:45] Cheryl Crow: Love it. Do you have a favorite quote or inspirational saying for tough days? 

[00:49:53] Zac Spinosa: Oh, well, I’ll use the one that my dad said to us as kids.

[00:49:56] Zac Spinosa: It’s not grammatically correct. I have it tattooed on my leg and it was when we were [00:50:00] kids, he used to go, be good, stay strong, don’t take no shit. And that’s what it was always about, right? Being good to people, not taking shit from anybody and always being strong and strong minded. 

[00:50:11] Cheryl Crow: I love. That’s so cute.

[00:50:12] Cheryl Crow: I can hear that in your dad’s voice, even though I haven’t met him. You described him really well. 

[00:50:17] Both: Yeah. 

[00:50:18] Cheryl Crow: I’m just, I’m so sorry. I’m just so glad you’re still here. I just, I’m just glad. Very glad that and I know your story’s gonna change a lot of people’s lives and hopefully save some people’s lives if they start noticing these symptoms in their kids.

[00:50:31] Cheryl Crow: You know, 

[00:50:31] Zac Spinosa: that’s my biggest goal. Cheryl was like, I, this year I really pushed I had no followers on Instagram, like almost a thousand, like beginning of the year. And I’ve really pushed this story and I’m at like 3,400 now, which is okay, like every, I go to so many different events and things and just talk about arthritis, whether it’s an arthritis event or not.

[00:50:49] Zac Spinosa: And I know we’re gonna hit it big and change a lot of lives. And I wanna put a book out, really help kids, especially, right? Because it’s once I start, when I was telling you the story, I started getting teary eyed. I was like, oh shit man, this is [00:51:00] actually kind of crazy when I went through.

[00:51:01] Zac Spinosa: So, yeah, you keep asking. 

[00:51:04] Cheryl Crow: Yeah. No. And I just wanna say really quick. I do, I always try to remind, remember to say, you know, thank you for sharing your story because I get teary, well, I got teary, I listen to yours, and I also get teary eyed talking about mine. And mine’s more of a straightforward case of medical gaslighting.

[00:51:19] Cheryl Crow: Like my life was never truly my life was not in peril. But I it’s really hard to feel helpless and it takes a lot to get someone like me and I think you too have very optimistic, kind of tenacious person to feel helpless. And in my case, I did feel helpless when I was having a hard time getting taken seriously by the medical community. And it’s always kind of emotional to talk about that story, so Thank you. Do you have a favorite arthritis gadget or tool in your toolbox? I’ve seen some cool lifting things like lifting, life hack things like put around your, yeah. 

[00:51:51] Zac Spinosa: So like when I was first training, like there’s a few tools.

[00:51:54] Zac Spinosa: So I’ll give you some strength training tools for people with arthritis because I think these are important. So, [00:52:00] a safety swap bar is something that can sit, it has a cushion, not the cushion on your back. Like those ones you see never use though, those terrible. But this one has a cushion over the back and over your shoulders.

[00:52:10] Zac Spinosa: So it takes a lot of the load off your spine and allows again, especially in this position. ’cause a lot of people with arthritis, tight shoulders, they’re not able to get back here like this, right? And even with their wrists, even for me, I trained my wrists for 10 years to finally be able to wrap my thumbs around the bar.

[00:52:25] Zac Spinosa: Not even joking. But now with this, it sits in front of you, you’re able to hold the handles. It’s a lot more ergonomic for people with arthritis. That’s one. Straps. So if you have bad grip strength and you have pain in your hands with holding things, there’s so many amazing things like figure eights, which you can wrap around your hands and loop around the bar to do rows with, to do your deadlifts.

[00:52:45] Zac Spinosa: And then even for me, when I lost the ability to use my hands for about a month if you ever see those girls doing like the gl kickbacks on Instagram you use one of those and you put it on your wrist and you attach it to a gable machine, you can do your pressing and pulling motions without using your hand.

[00:52:58] Zac Spinosa: So those are some tools that I’ve [00:53:00] utilized for myself and other arthritis patients. 

[00:53:02] Cheryl Crow: I love that especially Yeah, with, for me, my biggest involvement is in my fingers. And I’m a, I’m able to wrap around and everything, but there are times when it’s like my fingers fatigue before the muscle I’m targeting.

[00:53:14] Cheryl Crow: You know, so those tools are super helpful. This is okay if you don’t have one, but do you have a favorite book or a movie or show you’ve watched recently? 

[00:53:23] Zac Spinosa: Oh, I haven’t watched a single show almost in six months, which is crazy. But if I was gonna give a book recommendation to people with arthritis, it would be, I know it’s probably so, cheesy, but like The Alchemist, I think that’s such a incredible book by Paul Coello.

[00:53:37] Zac Spinosa: For anybody who’s dealing with adversity and struggle and finding their path forward it’s one that you’re gonna wanna read probably twice a year because you’ll find new things. I Have you ever read it before? 

[00:53:47] Cheryl Crow: No, it’s been on my list.

[00:53:49] Zac Spinosa: It’s a short read. It’s a short read. It’s I read it every year and it’s so funny.

[00:53:54] Zac Spinosa: The characters that you relate to, I remember relating to one when I first got diagnosed, and there’s, I’ll give you a quick [00:54:00] excerpt of the one story. So there’s a story in it where the main character meets this king in the middle of the desert, and he says, I want you to walk around. I need you to walk around this entire palace and carry this spoon with oil, and I need you to not drop a any bit of the oil, or you’ll never speak to me again and never get any of my riches. So the kid walks around and he’s walking through all these different rooms and this crazy things for about an hour, he gets to the king and the king says, what did you see?

[00:54:27] Zac Spinosa: And he’s nothing. I saw the oil. He is so you walked through all my beautiful palace, my gardens, and this and that, and you saw nothing but the oil. He’s do it again. But then this time he walks around and he spills the oil and the whole method of this, the whole thing behind it. I’m butchering it, I think.

[00:54:44] Zac Spinosa: But the whole thing is like you can’t walk through life with your blinders on and forget all the beauty around you, and only be focused on the pain or the suffering or the goal. In my case where I’m happy but all I’m focused on is this end goal. You have to enjoy the things around you, but then you [00:55:00] also can’t forget about the things that are close to you while you’re chasing after these beautiful things around you. Right. So that’s one of the small stories within this, and I think it’s an incredible book that everybody should read. 

[00:55:10] Cheryl Crow: Oh, awesome. Well, you definitely convinced me. Yeah. Oh my gosh. It has 3 million ratings on Good Reads. Yeah. I just was getting, wow.

[00:55:17] Cheryl Crow: Yeah. No, I’ve heard a lot of, I don’t know why I haven’t read it. It’s going on my list now. 

[00:55:22] Zac Spinosa: They’re a little religious undertones, but Okay. You can just skip past them. 

[00:55:25] Cheryl Crow: It’s fine. Yeah. Yeah. Combining magic, mysticism, wisdom and wonder. Okay. What does it mean to you to live this is kind of the, this is the question, the central question this podcast is trying to answer through the storytelling and the personal reflections, but what does it mean to you to live a good life and thrive with autoimmune disease or rheumatic disease? 

[00:55:50] Zac Spinosa: For me, I think I need to be able to do everything that any other person can do whether I have the disease or not, and find a way, whether it’s the way that they would do it or [00:56:00] it’s the way somebody who has restrictions and things like that.

[00:56:03] Zac Spinosa: And for me, I’ve, I feel like I have a chip on my shoulder a bit from all the things I’ve been through. And I want to have a crazy, amazing life and leave a legacy behind me that’s like really important and becoming a father eventually is huge to me. And being able to ne like I look at every decision I make.

[00:56:21] Zac Spinosa: If I had kids and they were going through, or they were going through, would I be proud of the decision I’m about to make or if they were gonna make that decision? So it’s if there’s moments where I wanna give up and there’s times where I don’t want to do the things that I know I should do, if I was the father myself, would I be proud of them.

[00:56:38] Zac Spinosa: Right? And then if I have somebody looking up to me to be like their superhero. Would I be giving up? You know what I mean? So for me, it’s all about creating a legacy and creating an aura around myself that shows tenacity. Like we talked about, shows perseverance and wholeheartedly belief within myself and what I’m capable of because of this disease.

[00:56:58] Zac Spinosa: This disease molded me [00:57:00] and forged me into who I am today. Like the pain, every single second I’ve dealt with it has been a blessing because it’s a constant reminder that I’m still here and I’m even with that shit that sucks every single day, i’m still making it through to the next day. I have a hundred percent survival rate.

[00:57:16] Zac Spinosa: So there’s nothing I can’t achieve if I work for it. Right. 

[00:57:20] Cheryl Crow: I love that. That’s amazing. And I’m sure your future kids will be proud of you. It’s kind of strange to think that they could find this video. I don’t know if there will be YouTube in, in, 

[00:57:32] Zac Spinosa: yeah. You never know. 

[00:57:32] Cheryl Crow: Maybe YouTube will be like a chip in our brains.

[00:57:35] Cheryl Crow: And when you have kids, like in five years, right? Or two years, I don’t know what you’re talking . 

[00:57:39] Cheryl Crow: but no, thank you so much. This is great. And I, you mentioned your Instagram channel 

[00:57:43] Both: yeah. 

[00:57:43] Cheryl Crow: You just out say the handle in case people want follow.

[00:57:47] Zac Spinosa: It’s Zac, Z A C the, arthritis coach.

[00:57:51] Zac Spinosa: So the hardest part is getting my name spelled right. ZAC, yeah. Or ZAC as you would say it over there, as you would say Z. Yeah. The arthritis coach. 

[00:57:59] Cheryl Crow: [00:58:00] Perfect. Yeah. And I will put links to your gym in the in the show notes as well as links to, you know, your Instagram page and also the research that, that I mentioned, just because I think it’s good to have 

[00:58:13] Zac Spinosa: some people need to see it.

[00:58:13] Zac Spinosa: Yeah. 

[00:58:14] Cheryl Crow: Yeah. They need to see it because it says sometimes it does seem like too good to be true, but, you know, I think one my little last little soapbox is I think a lot of people, I mean, lifestyle variables aren’t either or right? But a lot of people just only wanna focus on nutrition. It seems, it’s just my observation and I feel like easier, it, I feel like strength training’s easier than nutrition.

[00:58:34] Cheryl Crow: ’cause nutrition should do it multiple times a day, whereas, you know what I mean? Yeah. Anyway, that’s, maybe that’s ’cause I’m former athlete or current athlete, whatever. 

[00:58:42] Zac Spinosa: Discomfort isn’t fun for people. Right. So eating as much as it like sucks, not eat a cookie or something, it’s easier to not do something than it’s to do something.

[00:58:49] Cheryl Crow: Well that’s actually a great point. The restriction, which I am definitely against a lot of the extremely restrictive diets. ’cause as of course as you mentioned, they cause a lot of stress and increase your cortisol. [00:59:00] So you get, you’re just treating one inflammation for another. But anyway, I like to provide the evidence because the evidence for strength and training and exercise is a lot more uniform than the evidence on nutrition.

[00:59:09] Cheryl Crow: And it doesn’t mean that is, it’s not gonna come in the future. There might be better evidence in the future, but it’s if I had to only choose one lifestyle thing to do for my body, it would be exercise and strength training followed by sleep. Sleep is really important. Yeah. For inflammation.

[00:59:25] Cheryl Crow: Yeah. And personally, basically, and this is not to say for those who, anecdotally, if you, if your needle is moved, so you know so strongly by nutrition, that’s amazing. I’m not knocking, it’s just, I think a lot of people’s default assumption before they become informed is that like the diets are gonna be the most important.

[00:59:43] Cheryl Crow: And that’s not really the case in the evidence. So, necessarily at the population level. So anyway, but back to your story, this is about your story and I’m grateful to you for taking the time today and I’m sure we’ll have lots of, hopefully lots of follow up questions. Make sure to comment on [01:00:00] YouTube if you have any questions or reflections from the episode, and also on Instagram or Spotify or wherever you’re listening.

[01:00:06] Cheryl Crow: So thank you so much again, Zac. You’re off to great things. I can’t wait to read your book too when you write it. 

[01:00:11] Zac Spinosa: Thank you, Cheryl. I’m sure we’ll talk again soon. For sure. 

[01:00:14] Cheryl Crow: Okay, thanks. [01:00:15]

Zac Spinosa: Thank you so much. Have a great day. Bye.

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