A few weeks ago I left my career as a full time radio personality to pursue my dream of owning my own business. It is the first time I have intentionally discarded my "safety net" of regular employment. Thanks to a Global Pandemic, my radio job's pay and hours were drastically cut, while at the same time, my business was gaining momentum. So, needless to say, I am a bit out of my comfort zone, financially. At the same time, I have the desire to learn from people who make life look easy. My guest on The Blathering is Marisa Zappieri-Caruana and while I was unable to say her name when we recorded the interview, I have learned how to say it - as well as an amazing story of resilience and perseverance. You can find Marisa, her story and a link to order her forthcoming book at her website.Transcript
Speaker 1: 00:00 Welcome to positive blathering. It’s a little bit weird because my son, ,Shaun is running things in the back booth and I’m in here with the guests and that’s a little scary to me, but, um, it’s a very special day for me because one, I’m trying to get back into the swing of doing the blathering. It’s a, been a little bit of a hiatus because I’m so busy here at ROC Vox, which is not a bad thing. I’m not complaining at all. Believe me. I’m not complaining, but, um, now I have, I’m trying to bring more guests in to do the blathering, inspiring people. We have had so many people who have overcome so many odds and, uh, well, why not bring one of the most resilient that I’ve ever gotten to know at least online. This is my first time meeting you in person Marisa. And I don’t want to murder your last name.
Speaker 1: 00:57 That’s what I thought, but I couldn’t remember it precisely. And I knew that I would just, I would destroy it.
Speaker 2: 01:05 It’s it’s hard. It’s not like Smith or right. Or black, you know, easier. Yes. That’s all. That makes sense. It,
Speaker 1: 01:14 So you, you are the founder of lupus chick. Yes I am. And is it lupuschick.com is the website, correct? Right, but that started the whole story I read through your, your website. And I have to say so resilience. I totally agree with, I agree with that word, 100% you are, if you look up resilience in the dictionary, there’s a picture of you. Um, I don’t know if you’re doing that, but take me through, take me through the beginning of your journey with lupus and then we’ll, we’ll touch on things here and there, but when did you discover that it was lupus? Or actually, let me, let me ask a different question. When did you start realizing there was something that was wrong because it wasn’t a while. It was a while after that you were actually diagnosed with lupus.
Speaker 2: 02:16 Correct. And that’s usually the way it goes. Most people are sick for years before they get an accurate diagnosis, especially with lupus. Um, but for my family, you know, we can go back to me really being a baby and having a lot of health issues. And it just got worse and worse as the years went by, I would say around eight, it was very apparent that there was something wrong, but you know, I’m going to be 43. So this was back in the early eighties. Doctors were not, you know, testing for lupus. I never even heard the word lupus until I was in my twenties. So it was more of, you know, she’s just a sickly child. She has asthma, she has allergies. She has all these autoimmune kind of things going on. Um, but they didn’t really ever do any further testing. So I just sorta dealt with it. You know, I lived through my teenage years and then the beginning of my college years, um, I knew I was a little bit different than my friends. You know, I got sick a lot. I always took naps. Um, I always had strange fevers, weird rashes. I grew up in South Florida after we left New York city on long Island.
Speaker 1: 03:20 I grew up in South Florida, too. Yeah.
Speaker 2: 03:23 I went to Nova. I grew up in Fort Lauderdale. Yeah. Neighbors. Yeah. I went to plantation high school. I went to st. Thomas a corner. Oh, nice.
Speaker 1: 03:33 This is really weird. We’re roughly the same age. I’m 47.
Speaker 2: 03:37 Yeah. So you’re just a, you’re probably just a couple of grades. We probably do. We’ll have to talk about that later. Um, that’s so funny. Yeah. So we went there after we left long Island and, um, we were, we were on the South shore. I went to Lynbrook Lynbrook high school before I went to plantation. Is that
Speaker 1: 04:01 My family’s from Massapequa. We moved from [inaudible] when I was five down to, uh, down to plantation.
Speaker 2: 04:06 That’s so funny. So we actually lived in sunrise. That’s where we moved to sunrise before we ended up. That’s hilarious. Small world. Definitely. Well, as, you know, Rochester again, lupus had a part in that as well. So as you know, living in Fort Lauderdale and Florida, the sun is just, it’s brutal and it never ends. It’s 365 days a year of heat and a heat and sun is actually one of the largest triggers for lupus flare ups in a large percentage of people. So, you know, I was sort of like in prison when I lived down there, I really couldn’t leave the house until seven, eight o’clock at night. Um, because it would just constantly bring up more and more symptoms if I was out in that sun, even for just a few minutes. Yeah. So I actually wanted to move to Canada. I love Canada. Uh, I think it’s absolutely beautiful there and I love the people and, um, you know, my family and I settled on getting as close to the Canadian border as possible. And we wound up in Rochester.
Speaker 1: 05:11 Yeah. That’s amazing. I I’m just, I’m still blown away by the parallels of our, of our previous
Speaker 1: 05:22 Florida to Rochester. And that’s like throwing darts. I mean, that’s really specific. When did you leave South Florida long story? There it’s always a long story. Isn’t it? It’s never like, Oh, I’m 2001. I moved up here 2002. I moved back 2003. I moved back up here 2004. I moved back 2007. I stayed, I moved up here to stay. Yeah, that was bad. And that was, that was when I was finally over South Florida. Yeah. I was working for a cruise line. And so that’s the reason why I kept bouncing back and forth because there was a job. And then the, I didn’t like the job anymore. And then I went back and then they had another job and it lady was a contract worker. Right. Um, and then the last time I could have stayed, we could have stayed there, but we couldn’t buy a house. And, uh, I didn’t know if I wanted to raise my kids there to be honest. And I, and we lived in Fairport for a short time and, and my inlaws lived four houses down for months. So I was, I was like, we’re moving the Fairport. That’s it
Speaker 1: 06:25 I’m so happy to be up here. I, I know for a fact I wouldn’t be doing as well in every aspect of my life as if it had, had we not moved back to Rochester. So
Speaker 2: 06:36 You can see that. I definitely think there’s a difference in quality life up here. I love Rochester. I would have never thought that I would have wound up here. Um, it wasn’t on my radar, you know, but like growing up in South Florida was great. It was great at, you know, at the time it’s changed a lot, but you know, coming from long Island and then being in New York city and then being down there, I kind of wanted to get away from millions of people, you know, and crazy traffic where it takes you an hour to get 20 minutes, you know, somewhere that should only take you 20 minutes. And, um,
Speaker 1: 07:07 Sounds like me. This is like word for word. What I’ve been saying for years
Speaker 2: 07:12 Living. I mean, you really can’t beat Rochester when it comes to the cost of living.
Speaker 1: 07:16 Yeah. Now, so you, you have accomplished quite a bit. And especially recently, one thing that I’ve found with, with people who have undergone some health problems when they were younger, is that it really made them really accomplish things like you really are able to set goals and go after him and, and fight through any kind of obstacles. Um, is that it seems like that’s the case for you as well.
Speaker 2: 07:48 Yeah. I was actually just talking to someone about this not too long ago. I said, I feel like if you have like a, uh, chronic illness diagnosis or you experienced some type of trauma, um, and you get a different perspective on time, you feel like you need to do so much and you need to do it quickly because you don’t like, especially for me, I don’t really know when I’m ever going to go into a really bad flare up or, you know, be down for several months. I think there’s also a level of, especially with chronic illness. I truly believe this almost like a overcompensating because I was sick for so long. I lost so many years of my life. There was such a large gap there. Um, you know, being in my twenties and my early thirties and watching everyone that I know graduate college, you know, get married, have children start businesses. Uh, you sort of feel like you lost a lot. So I feel like you try to overcompensate then and do so much to sort of make up for that. I’m not saying everyone does that, but I do notice that a lot, um, with the other like chronic illness warriors that I meet, I feel like a lot of us are very type a personalities and we don’t really stop. Like, even though our body’s like, okay, you need to just shut off now. Our is like, no, we’re going like a hundred miles an hour. Yeah.
Speaker 1: 09:06 Yeah. And I think, I think a lot of it has to do with you just you’re fed up with the limitations. Absolutely. You know, like dammit did that. That’s not gonna stop me. I’m sick and tired of not being able to do what I want to do. Right. So we’re going to do it and that’s it. That’s how it’s going to be. And you figure out a way. And you know, I really believe that as much as I would not want you to suffer in any way, I wish I could go back and remove all of that from you. But at the same time, I think our world needs people like you because you, you show what it’s like to overcome adversity. You show what it’s like to live diff through difficulties. And, you know, you give other people hope, you give other people a purpose and you help other people through what they’re going through, whether you know it or not. Right. So as much as, as much as I don’t want you to have to experience all that, you know, I’m kind of glad that you have, it’s a weird thing to say, but for the greater good for all the other people who see what you’ve gone through and said, if she could do it, I could do it. Yes.
Speaker 2: 10:14 That’s my hope. I don’t want anyone to, I don’t want anyone to ever look at like any of the things that I’ve accomplished or successes, you know, like by the world standards and just think that, um, you know, they just happen. Like there was such a process and there was a lot of pain that took to get there. And, um, you know, it wasn’t because I knew someone or I got lucky I’ve truly been blessed, but I think it’s because my desire, my desire has always been to help people ever since I was a little, um, when I was really young, I asked my mom if I could volunteer at the nursing home and I was so young, but they like signed a million papers and it let me do it. And then I went into nursing because I just wanted to help people. I wanted it to be a travel nurse.
Speaker 2: 10:58 I wanted to go to other countries. And, um, you know, then when everything happened and, and lupus chick sorta came about, it was another way for me to help people very different than what I had originally planned. Um, but I just want people to at least have someone in the autoimmune chronic illness world that they can say, you know what, like she’s been through a, to Z and she was still able to do these things. And, um, it’s really by the grace of God, like I have a very strong spiritual life. I know that I’ve been so blessed medically, I should not be alive. Um, so, you know, I hope that I can be that person. There are a lot of amazing chronic illness warriors. That’s a great thing about like social media and our technology that we have today. A lot of people are getting out there and advocating. Um, but that was my hope and starting lupus chair.
Speaker 1: 11:48 I liked the chronic illness warrior. Yes. I love the way that you phrase, because that really just flips the script. Doesn’t it? I mean, those, those two things, aren’t
Speaker 1: 12:02 You put those together a chronic illness and warrior, but it’s really what you become when you, when you endure a chronic illness it’s you have to. Yeah. And, and so going back, going back when you were younger and you said you really liked to help people and stuff, um, where do you think you got that from?
Speaker 2: 12:25 I think that honestly, uh, I think God put that in me. Like, that’s just who I was, you know, when I was formed, I honestly believe that was the gifting that I received. And, um, you know, some people have very different gifts, but I’ve known that since I was little. And I also think, you know, my family growing up, I was raised by my grandparents, um, for a large portion of my life. And my grandmother was very kind, very caring. Um, all the, all the qualities that you would see, uh, maybe in people, if you’re spiritual, if you ever read the Bible, just that, you know, loving kind, compassionate, um, thoughtful, positive, like that’s who she was, same with my mom. So I was surrounded by amazing women. And I’m so thankful for that. And it was always, even though we didn’t have a lot, it was always, you know, if you see someone else that needs help, then you give what you have to them. So that was like, sort of ingrained in my life since I was little.
Speaker 1: 13:31 Now there, I read a story on your website about an accident that you had when you were in your twenties and that put a bit of a, a spin in where you were headed. Would you mind talking about that? Would you mind telling us about what happened?
Speaker 2: 13:48 So it’s out there. I can talk about it. Yeah. So that was sort of, um, for me, that was sort of like the turning point in my life. So as I had mentioned, I had already had like a lot of symptoms growing up and through college, I was in nursing school. I was almost at the end. I had spent years in college and, um, I was really excited to finish nursing school and I was crossing a street in downtown Fort Lauderdale on a Sunday evening. It was around seven 30 at night. And I got hit by a drunk driver that was driving a Ford ranger at about 50 miles an hour. So I remember hearing, so, you know, like South Florida anyway, as crazy drivers. So you’re sort of aware of them all the time, you know, so I heard the truck and, uh, I heard a vehicle I should say. And I heard that it was, you know, traveling much higher speeds than any of the other, uh, vehicles that were around. And, um, honestly there was just nowhere to go. Like I tried to run. Um, but there was just no possible way.
Speaker 1: 14:54 This was in the nineties at some point, this was in 2001 Oh 2001. All right. So yeah,
Speaker 2: 15:00 So, and that sort of triggered it, you know, a lot of, a lot of autoimmune diseases and chronic illnesses, you look back and there is a trigger that you can pinpoint for some people that could be, you know, a pregnancy or maybe they got really ill and were in the hospital, or they had some other type of physical trauma, but they can go back to that point. And for me, it was absolutely when I was hit. And then I sort of spent that next year in recovery cause I had a lot of internal injuries and then I started to have a lot more lupus symptoms come out. And at first they were, you know, luckily I was being seen by an amazing team of doctors at North Broward trauma hospital. And, um, they were thinking, okay, are these symptoms, do they have anything to do with being hit?
Speaker 2: 15:48 Because one of the symptoms was I’d had a small stroke. So it was like, okay, is this part of the, the head injury that I had? Um, but then with the other symptoms altogether, they were able to do a lot of tests and then telling me that I had lupus. So to them, it was like, you know, in three weeks here’s a lupus diagnosis. And that might seem terrific because that is very quick. But the average for lupus diagnosis is an accurate one is six years. At that point I had already been sick for about 15 years.
Speaker 1: 16:19 That was it because that, it just, it takes on so many forms and has so many different symptoms that it’s hard for them to really pinpoint what it is all that time. And so, so you say you can pinpoint this time, that specific accident, how did your life change after you, after you went through the recovery and you were kind of trying to get back into life? Like how did, how did that affect you?
Speaker 2: 16:46 So the life that I had been so used to, I never saw that life again, that was completely gone. Um, you know, when I was finally released from the hospital, I went into like a rehab. Um, and so it was there, like I learned to walk again, cause a lot of my injuries were to my liver. So I was flat for months because I couldn’t put any pressure back on the liver. Um, and I had some pelvic bone fractures, so I learned how to walk and then, you know, and that was a very slow process. Um, worked with a physical therapist, had a physical therapist come to our home. So nothing, nothing was normal. I couldn’t return to school. I couldn’t work. Um, I couldn’t even get myself food, you know, so thanks. Thank God. I had my mom and my grandmother there and you know, I had a nurse that would come to the house.
Speaker 2: 17:36 I had a physical therapist. I had like a whole team of people that helped me. So being in my twenties and going from, you know, school every day and nursing rotations, I was a bartender at night. Like I was always on the go bartend. I was at Wolfgang puck. Then it was a, Billy’s like a whole bunch of places by Nova. There’s a lot of restaurants over there. Um, so I was, I never stopped. And then it was like you were on a full stop. You know, the only time I ever did anything was for just like activities of daily, daily, living, something that, you know, most people you wouldn’t even think about, like brushing your teeth or getting dressed. These were like two hour endeavors for me. And by the time I was done, I was exhausted. Yeah. So, you know, I was not only just dealing with the injuries, I think that’s what made it so, so challenging was not just the injuries, but also now I had these weird symptoms and I had this new diagnosis and I sorta had to figure out, um, what was injury-related and what was lupus related and what does that look like now?
Speaker 2: 18:43 Like, will I ever be able to go back to school? Will I ever be able to work? Um, am, am I ever going to be independent? Again? My independence was a very difficult thing for me to reconcile for a couple of years there. Yeah. I was not the way I am today. I was very angry, very angry.
Speaker 1: 19:02 So that’s interesting. How did you, how’d you overcome that? How did you overcome it? How did you rechannel that, that anger or repurpose that anger cause all that energy, it stays there. You just have to sort of rechannel it and turn it around into something else. How did you, how did you manage to turn it out and into this positive person that you are now? And, and
Speaker 2: 19:26 So I will say like if I back up a little bit, I was always really a happy like baby. It was always a happy child. I was always very positive. And then it sort of dove into this angry bitter season. Um, so I can’t say there was one specific thing. I think it was several things that worked together over a few years. Uh, first, like you said, anger, when it just sits there, you know, maybe for some people, their releases they’ll go for a run or they’ll exercise. Do they have some form of release? I couldn’t, I was basically just stuck. Um, I could not, you know, get myself even to the kitchen by myself. So one of the things that I started doing was writing again, I always loved to write and I had plenty of time. So writing, um, it just sort of poured out of me and also, you know, my, my spiritual side definitely grew because I think when you experience a trauma and then you have a chronic illness thrown on top of it, you know, at some point you sit back and you ask yourself or you ask God, or, you know, the, the being that you believe in, um, why did this happen to me?
Speaker 2: 20:36 Why am I still alive? Like, that was my biggest question because you know, the trauma surgeon was like, there is absolutely no reason that you’re alive, that I can even tell you.
Speaker 1: 20:45 That was great. When a surgeon says that too. I remember he sat,
Speaker 2: 20:49 I remember he sat on the bed and he said to me, uh, you definitely have someone looking out for you because you shouldn’t have been alive when you arrived to the hospital. And then he told me that most pedestrians don’t arrive alive when they get there. Um, and I did my own research and I think it was about 70%, you know, don’t make it to the hospital. Uh, so I had all of these questions and then it was like, well, I can’t do nursing now because now I have a nurse that comes and helps me. So what am I supposed to do with myself? And, um, that was a prayer that I prayed for a really long time. And I’m, again, I’m really thankful I had my mom, my mom is a strong, strong, tough Italian woman. And I’m very much so of the belief that you just pick yourself up and like, there’s no excuse, and you’re still able to do anything you want. It might just look differently than you had originally planned. So she wasn’t gonna let me get by with like having my little pity party of one for very long. Like she let me sit in it for a little while and then it was like, okay, we’re going to wrap this up now.
Speaker 1: 21:56 That’s, that’s great. I think that’s really important. And, and there’s, there’s a lot of people who don’t have that person.
Speaker 2: 22:03 Correct. Which is another reason,
Speaker 1: 22:05 You know, they don’t, it’s, that’s a, that’s a blessing in of itself to have that person to say, okay, I love you, but here’s my foot, here’s your button. Let’s get going. Um, and that’s good. That’s really good. So, so you’re writing you really start writing a lot. Is that how the lupus chick blog became a thing?
Speaker 2: 22:29 It did. A funny thing is lupus chick actually came to me in a dream and it was a very vivid dream and it was such a, w had so much clarity and it was almost like an instruction manual had been handed to me. This is what you’re going to do. And I just remember waking up in the morning and I was so excited and because I had been praying for so long, like, let me just figure out what am I supposed to do now? And because, you know, my belief in God is like, he created me to be a certain way. He knows my personality. He knows that I won’t sit still. Um, I couldn’t just sit in the bed for the rest of my life and do nothing. I would be completely miserable. So I just took everything from that dream. And I said, okay, I have no idea what I’m doing, but I’m going to try it, you know, and we’ll see what happens. And I did. And lupus chick started as this tiny little blog. I don’t know if you remember blogger, like from back in the day. Yeah. So if you want, yeah, exactly. It’s with your MySpace.
Speaker 2: 23:34 You remember blogger was like, not the most, you know, my blog was not the most attractive blog ever. And, um, again, I really didn’t know what I was doing and, and think I maybe had a couple of people a week that would read it. Most of them are probably my friends and my family. But if you look back on the internet back then there was not a lot of information on lupus. There was not, um, you know, we didn’t have social media, so there wasn’t anything like that. Like I remember my education of lupus was one book in the library and it was very medical, um, heavy, which was fine because I’ve gone through nursing school. So I was familiar, but if I hadn’t, like I would have been even more confused from what was in there. So I started the lupus chick and, um, over time it just grew and sort of intertwined. And that season was this opportunity that sorta just landed in my lap one day to write, um, for some newspapers down in South Florida, which I could do from home. No one knew I was sick if I was interviewing them over the phone and that’s sort of what kicked off my journalism career. Like I never thought I would have wound up being a journalist.
Speaker 1: 24:43 How did you do that? You just called them and said, yeah,
Speaker 2: 24:45 I’m just going to interview you over the phone. And
Speaker 1: 24:49 Did you do that, like a freelancer, like interview people and then try to sell your article? Or did you actually get a job with a newspaper?
Speaker 2: 24:56 Yeah, so my first job was with the good news and, uh, they, their circulation was a couple hundred thousand people a month. It was a monthly newspaper, sorta like a CityLink or something down there, if you remember. And, um, they would, you know, contract me for different articles, different topics. So it was great. You know, it’s like I had this purpose in writing. I had some financial stability that was coming back because I had lost pretty much all my finances when I got really sick. And, um, from there, you know, I went on to Al Jazeera Huffington post U S news. I worked for Ganette when I first moved up here in Rochester. Um, this whole other world sort of opened up and then lupus chick grew, you know, we grew from a couple people a week to a half a million people a month, you know? So I always tell people, if you think that your effort just as one person can not do anything, um, you know, it was used like a match analogy, what one match can start. And I just want people to know that, just do it, like if you are thinking about doing it. I think the most frustrating thing is to just watch someone think about something for so long, but not actually moving.
Speaker 1: 26:09 I agree 100%. And I wouldn’t presume to, to compare anything that I’ve done with anything that you’ve accomplished, but in the same, the same respect, how you said, I don’t know how I’m going to do this, but I’m just going to do it right. And, you know, we, we just did the same thing. Uh, four years ago, this December, we held auditions for our film bottom feeders and the whole time we’re like, we don’t know how we’re going to make this movie, but we’re going to make it right. And we’re like this close to putting it out. You know, we shot it. We, we, we wrapped production on March 13th of this year. So it was like, as the world was crashing down around us. So that, that idea of going after something that you feel is your, is pulling you and you don’t know how, but you just know that that’s what you have to do. I mean, the best advice that I can hear that I can think of is just go do that.
Speaker 2: 27:13 Absolutely. Like, I feel like if you have that burning desire inside of you and you don’t do anything with it, there will always be a level of Discontentment and dissatisfaction and like something is missing in your life and you will absolutely, without a doubt, fail over and over again with all you’re doing what you’re doing, because I have, I have messed up so many times with lupus chick and I’ve learned so much. Um, but those do not even count, like in comparison of what lupus check has been able to do on the flip side of that. So,
Speaker 1: 27:51 So you have articles, you do, uh, interviews with other people that have a lupus and you highlight, um, you know, research and things like that is that basically what lupus chick is.
Speaker 2: 28:07 And it’s not just for people with lupus anymore. Like that is originally what it started as, but, you know, I realized as I got to know more about autoimmune diseases, a lot of autoimmune diseases overlap. So a lot of people that have lupus, you know, have fibromyalgia or ms or thyroid issues or diabetes there’s, so there’s over a hundred autoimmune diseases. Um, so we’re really for the entire, our slogan is the auto immune life because, um, you know, there’s just so many in that world and I don’t want anyone to feel excluded cause we all live with the same struggles, um, whether it’s, you know, our really how our relationships are affected or our employment status, you know, or just what we’re able to do on a regular basis because of our symptoms, we all understand, um, the daily struggles that we deal with. Whereas it’s really difficult to explain to someone that’s really healthy, you know, they can understand, but I think once you actually live with it, there’s just that connection.
Speaker 2: 29:07 And I think that’s what lupus chick brings. Um, so we do, we do a lot of articles. We do a lot of interviews, a lot of Facebook and Instagram videos and lives with experts with other patients. Um, we have an educational stipend, which was something that was really important to me because, you know, my educations, uh, journey sort of got hit really hard with lupus. And I’ve seen over the years, uh, men and women that maybe were diagnosed later in life in their thirties or forties. So the career that they were in, the job that they were doing, there were no longer, they were not able to do it any. Um, so then it was, well, how do I go back to school while I’m sick? And how do I pay for all of this? Um, lupus itself is very expensive. You know, it’s average about 50 to 60,000 a year in medicine and medical tests. So my biggest thing was I want to help people. I don’t care if they’re going for certification for trade school for university, for community college, but I want to be able to help them pay for housing and tuition and whatever they need the money for. Um, so we’ve given away nine, uh, partial college stipends now in the past five years, um, we’re giving another one away this fall. So
Speaker 1: 30:17 That’s amazing. That’s absolutely amazing. So now you take all of that writing that you did for all of those media outlets and what’s the next step you write a book and that book has been doing really well and it’s not even out yet, which I love that story. Yeah,
Speaker 2: 30:33 It was. It’s amazing. Um, so I got into publishing about three years ago, I sold my memoir to broadly books and it is, you know, it’s about thriving with chronic illness or trauma. It’s not lupus specific and it’s really sort of like a, like a battle cry or just, uh, an action plan of, you know, it has my story weave through it, but most of all, I wanted people to be inspired and just realize like they have a purpose. Um, there’s a reason that everything has happened and they can do something with that. And I just want them to be motivated and encouraged. So that was the whole purpose behind the book. It also has a lot of, um, food element to it just because most of my life was growing up with my Italian grandmother in her kitchen. So I love food and I’ve been able, you know, over the years after getting this diagnosis to sort of rework my relationship with food and realize that what I’m putting in my body affects everything like that is the energy that is the life source that my body is working off of. Yeah. Um, so there is a large food element to it. There is a cookbook element to the memoir as well. And so just came out on preorder. It’s on Amazon, it’s called chronically fabulous. And it will officially, it will officially publish, uh, in may. So
Speaker 1: 31:58 Congratulations. Yeah. What, um, what kind of foods do you eat? Do you stay with foods that generally reduce inflammation and things like that? Or how do you plan that menu?
Speaker 2: 32:12 I worked with a lot of like nutritionists and functional medicine doctors. And I tried, you know, there’s a million food plans out there, whether it’s keto or paleo or anti-inflammatory. And I feel like there, there’s not one specific diet for lupus and I, and I think that’s actually a good thing because so many have more than just the lupus. So I feel like the food plan really needs to be tailored to the person. Sure. And the other thing is when you have autoimmune disease, there’s also a high likelihood that you have food allergies or food sensitivities, because it all sort of works in the same way of your body’s having a hyper response to something. Right. Um, so I think it’s important to figure out if you have like allergies and food sensitivities, and then sort of make a plan around yourself. Um, for me, I know, I feel best with fresh fruits and vegetables, you know, certain grains, um, which some people won’t eat if they have autoimmune disease.
Speaker 2: 33:10 Cause they, you know, it’s could be inflammatory, um, lean meat, but do you sing like I do a lot of juicing, a lot of salads. I live on fruit and vegetables, pretty much, um, bone broths, you know, of course I cheat. I’m a sucker for a sleeve of Oreos. I’m not gonna lie or a Twix bar. I like the whole sleeve. It’s not just like, you can’t just have like one or two. So if you give me like hot coffee or hot tea and a sleeve of Oreos, I’ll be your best friend. I will feel awful the next day. Um,
Speaker 1: 33:48 Quick somebody to go get some Oreos now,
Speaker 2: 33:51 But yeah, it’s um, you know, you have to cheat, like I love juicy cheeseburger at Smashburger every now and then. Yeah. But I don’t like deprive myself of anything, but I can tell you once you eat really clean and then you sort of fall off the wagon, don’t feel awful. I know
Speaker 1: 34:09 I’m, I’m, I’m doing a reboot right now of my, my nutrition. Um, I, I have a very varied history with fitness and nutrition and I’m like, now I’m trying to get back to where I was, which is probably about 60 pounds ago. Um, but I was really, really specific about my macro nutrients and the ratio. And I had to eat a certain thing in a certain time and I, you know, I logged it all and it was very, I had to make sure that my workouts were here and there. And, and, um, that was, it was like this really obsessive compulsive thing about it. Um, and it wasn’t very good for anyone but me. I mean, anytime that you obsess about something, it’s, it’s usually, you know, there’s, somebody is not going to dig that. So my wife was kinda like, you know, you know, you decided to have a cottage cheese and then you’re back on your computer. Cause I’m back like reworking my, my plan for the day, like, all right, that puts my carbs up here and my, you know,
Speaker 2: 35:18 Okay, so you really, like, you took it all the way. I love your, but you said like you logged everything. And I think that that like really jumped out at me because I tell anyone like when they get into, whenever they start something, like keep a journal of it. Like that was how I was really able to figure out what foods were making me feel worse and what foods were helping me. Absolutely. And it wasn’t just journaling for like a week or two. I have years of journals every day. Like even if you just take like your, your calendar, like your daily calendar and just write some notes down of what you’re eating or what supplements you’re taking. I don’t know if you were on any supplements, but you know, or protein powders,
Speaker 1: 35:58 Everything. If it was out there. I was, yeah, I was taking it. Yeah. I would have like a hand, like two handful. I have small hands to two handfuls of, of, of, you know, various pills. And, but I mean, it wasn’t, it wasn’t, I didn’t take a lot of like a, I mean, it was all natural stuff. I didn’t take a lot of crazy things, but, um, protein powder, for sure. But, so I’m going back. I hear my son snickering in my, he knows. Um, but you know, I’m trying to get, I’m trying to get back to some modicum of healthiness. I dunno. I talk about the sleeve of Oreos thing. I was like the package of Oreos.
Speaker 2: 36:42 I can’t, I can’t hate on that though.
Speaker 1: 36:46 Well, so here’s the difference though. So you say, you know, when, when you were at your worst, it would take you hours to put on your, your clothes and stuff like that. I can’t put on my socks because I’ve gained so much weight. So I’m like, it’s like folding a bowling ball, you know, so I’m trying to stop, but
Speaker 2: 37:08 I think, you know, I I’ll, I’ll share a, I don’t know if any of your listeners like, uh, documentaries, but there was one that really it’s what sort of shifted me in a totally other, you know, different direction. I already had been thinking about food and, you know, growing up like in an Italian kitchen per se, very heavy on pasta and cheese and dairy and um, you know, just stuff like when you have autoimmune issues, not really the best. Yeah. So I was already sort of moving in that direction and then I’ll never forget. I was really sick and I was sitting on my couch one day and I watched fat sick and nearly dead. And that was juicing, right? Yes. That would be changed my life for a watch that, yes. So, well, but here’s a great thing about that.
Speaker 2: 37:58 Take the juicer off the counter and wash it off and use it. But the cool thing about that movie was, um, the, one of the gentlemen in that movie, he had, uh, a very similar autoimmune disease to lupus and he was on all the same medicine that I was on at the time. And I was like, no, and I’m watching him. And he’s being tracked by this team of doctors while he’s doing this documentary and he’s going off more and more and more of his medicine. And I was like, you know what, what, I’m already on 12, it was on 12 pills. I’ll never forget. And I hate taking medicine. So I wasn’t the most compliant patient, which was not good. But here I am looking at my 12 pill bottles and I’m thinking what’s the worst? You know, they use chemotherapy for lupus. They use old chemotherapies. Like what, what else could possibly happen to me that hasn’t happened to me already at this point. Um, and then I just went like 150% and I got myself down to four medications and I’ve never, never been back.
Speaker 1: 38:58 And that’s, that’s from juicing and stuff,
Speaker 2: 39:00 Changing my diet. Jeez. Saying, I’m just sort of having this whole new, like relationship with food and you know, it wasn’t, I think you also have to add in the component of self care, you know, like making time for yourself, resting, um, having quiet time, like quiet time is really important. We don’t really get a lot of that in our life. Do you meditate? Do you practice? I do more in like a meditation prayer time. Um, you know, and just saying no, like I think that’s another thing that’s really hard for a lot of people. And so you just spread yourself so thin your body’s exhausted. Exactly. So it’s not just food, it’s not just taking supplements. There has to be like a holistic, you know, form to all of it. So
Speaker 1: 39:48 Yeah, I’ve been, I’ve been trying to, I go through these, these cycles where I’m meditating every day and I’m really good. And I’m like, bam, bam, bam. And then next thing I know, I haven’t meditated in three weeks. Right. And I’m, and I’m coming apart at the seams and I’m all frazzled and I’m like, what’s going on? You know? And, and then I go, okay. And I just found this, I keep looking over here, but my phone’s not there. I had this, um, it’s the sound that’s, it’s on a YouTube, you know, how they have those sounds that are like an hour long. And it was it’s this 900, a killer hurts really, really vibrations. I don’t know if it works, but I, I put it on and fell asleep to it. And, um, I had some of the strangest dreams ever really just bizarre. I mean, I usually have bizarre dreams. Cause I was, I was thinking about when you said to how you had the lupus chicken to you in a dream and you wrote it down and you know, and it was like a manual and I’m thinking, wow, that’s amazing. If, if I wrote things down in my dreams at the make sure that nobody sees it because they’re going to lock me up and throw away the room, you know, because I am, my dreams are just insane. Um,
Speaker 2: 41:03 I think he will be jealous of that. A lot of people don’t dream or they don’t remember.
Speaker 1: 41:07 Yeah. Yeah. I think, I think I would be upset if I didn’t remember my dreams. Cause I like when I wake up and I go to hell, was that all about what was it? The giraffe I don’t get that
Speaker 2: 41:18 Sounds are really important. I actually have like a whole playlist of YouTube of sleeping sounds specifically for that. And it, you know, I don’t use it all the time for sleeping, but even just taking like 15 or 20 minutes and going into like my library and shutting off the lights and putting on and just sort of like calming my body down. Um, also like restorative yoga is really good for calming down your nervous system.
Speaker 1: 41:41 And I tried yoga. It wasn’t, but it’s not like it didn’t work.
Speaker 2: 41:45 Like your typical, like what you think of when you just hear yoga. It’s, you’re sort of in like a very quiet if you go and take a class, I’m usually in a very like quiet room and it’s like four or five poses that you hold for like 10 or 15 minutes. Usually you fall asleep. You’ll usually hear people snoring in like a restorative yoga class because it calms your body down that much for that he will pay,
Speaker 1: 42:09 Lay down and go to sleep and pay me $50. Brilliant. I love that business model. That’s how crazy our world is. Um, I was, uh, I was thinking of when I tried yoga and I went into the, um, what’s the one where you’re laying down and you do that and it’s like this, Oh, why can’t I do upward dog or something
Speaker 2: 42:34 Downward dog. And we know that downward dog is when you’re more.
Speaker 1: 42:37 Yeah. It’s the one where you’re. Yeah. And I was like, alright, I can do that. And both my calves went and I was like, we had to like sit there for 15 minutes and rub him out. I’m like, all right, no more, no more yoga.
Speaker 2: 42:54 So when I first decided I’m going to try yoga because I don’t ever go the easy route, I decided my first time was going to be, um, Bob, Bob Harper’s weight loss, yoga. So from his television show, right where the people are on there and trying to lose a certain amount of weight, he is like, no joke that guy. So it was an hour long. I think I was about 15 minutes in my whole body was shaking. I was sweating. I was like ripping layers off. And I probably said more curse words. And then 15 minutes to that poor guy than I have in years. And I shut it off. And I remember the next day I could not even get up my stairs, but let me tell you, I went back to it and I’m in like two weeks, you see, you see muscles like start to pop out that you didn’t even realize like you had. So, you know, it was good.
Speaker 2: 43:49 I wouldn’t push yourself the whole way. Maybe the first time, like don’t ever, especially people that have like chronic illness, like it’s really important not to push yourself in exercise to the point of fatigue because you can actually put yourself so far back at that point. So, but again, I think, you know, we want, we want to do things and we want to know that we’re still able to do things and that we don’t have all these limitations. Like it’s, it’s a horrible feeling to just feel like you are limited and yet you watch life going on around you. Right. So, but you know, there’s cause there’s gotta be a balance.
At the same time, I have the desire to learn from people who make life look easy. My guest on The Blathering is Marisa Zappieri-Caruana and while I was unable to say her name when we recorded the interview, I have learned how to say it - as well as an amazing story of resilience and perseverance. You can find Marisa, her story and a link to order her forthcoming book at her