My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
Living Through Medical Emergencies
Steve Lovelace didn't plan to share his recent health crisis on the Spoonie Sisters podcast, but sometimes the most powerful conversations happen unexpectedly. When Steve woke at 3:30 AM with unmistakable heart attack symptoms, he made a decision he now warns others against – driving himself to the emergency room. Despite his high pain tolerance developed through decades of chronic pain, the gravity of the situation was clear when doctors discovered a blood clot in one of his nine coronary stents.
This heart attack was just the beginning of a medical emergency trifecta that hit the Lovelace family within weeks. Between his son's broken wrist from a scooter accident and Steve's own emergency room visit for a severe laceration requiring nine stitches, the family faced a perfect storm of health crises. Yet through it all, Steve maintains his characteristic humor and resilience – qualities he credits to his Irish and Scottish heritage.
The conversation takes a sobering turn when Steve reveals the financial burden of his new blood thinner prescription. At $490 per fill (with the "generic" alternative just $2 cheaper), he now faces an impossible choice between life-saving medication and covering basic needs like food and utilities. This stark reality highlights the broken medication pricing system that forces vulnerable patients to make dangerous compromises with their health.
Despite these immense challenges, Steve finds strength in sharing his story through his podcast "Arachnoiditis Unfiltered" and in connecting with others who understand the chronic illness journey. His wisdom about focusing only on what you can control in your "three-foot circle" offers a powerful framework for anyone navigating difficult health circumstances. As both Steve and Jen remind listeners, finding community and even moments of laughter during dark times isn't just possible – it's essential for survival. Their conversation reminds us that no matter where we are in our chronic illness journey, we don't have to face it alone.
- Steve: https://www.instagram.com/splovelace?igsh=MTA4eHRxbDB0ZmcyZQ==
- Defying Limits: One Man's Battle with Arachnoiditis
- https://youtu.be/VfUyE12CpaE?si=_Odmk5dt4j_qJyJW
- Living Through a Heart Attack - My Spoonie Sisters
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Welcome back to my Spoonie Sisters, and today I've got a surprise episode. That completely came unplanned, but we're going to wing it and have some fun with you guys today. I have Steve Lovelace joining me today. Hi Steve, how are you?
Speaker 2:I'm great, Jen. How are you today?
Speaker 1:I'm alive and kicking.
Speaker 2:That's always good. You know what? Every day you wake up is a good day, in my opinion.
Speaker 1:Absolutely. We've been chatting about this already, but I'm excited to have you share kind of some of what's been going on. It's been some extremely challenging things and not fun things, but it's an important subject to talk about and hopefully us talking about it can help some people out there. So how about you catch us up on what's been going on with Steve?
Speaker 2:So first I'd like to say thank you for giving me the invitation to be here. I really appreciate it. It hones my skills and my podcasting efforts With my podcast, arachnoiditis Unfiltered, with Sarah Lewis. Please join in any of you listeners. We do chronic illness and it's all positive. We try to stay away from the negative, but what I have today is kind of negative and sort of a PSA public service announcement.
Speaker 2:Within the last, well, two weeks ago, I had my third visit to the emergency room for three different things. The first, which was on the 27th of July, was a heart attack that woke me up about 3.30 in the morning. I woke up nauseated, started feeling my chest pain, started feeling axillary pain, felt the carotid, felt my jaw. I mean, it was classic. I know I'm having a heart attack, so I pop a nitro trying to open that vessel up and get a little bit of blood flow in there basal dilate. I go tell my son, hey, I'm having a heart attack. You know, very casually it was kind of almost matter of fact and I said, because he suffers from anxiety, I did not want him to have to worry about me. I said I'm going to be okay, I'm going to drive myself to the ER, and this is where the PSA comes in Do not drive yourself to the emergency room. I've had so many people tell me don't do that. But the reason that I did was because I wanted to go to the heart hospital. That has seen me for three heart attacks already and I did not want to go to. There's a couple of local hospitals within a few minutes of my house, but they're not really set up for a heart attack, and it's a good thing that I didn't call the ambulance, because when I got to the heart hospital and they put all the leads on me and they were looking at my EKG, they said it doesn't look like you're having a heart attack. To which I replied yes, I have such immense chest pain, but to know me is to know that I downplay my pain quite a bit. I have a very high tolerance for pain over the years because I've been in pain since I was 20. I'll be 63 this Thursday, so I've been.
Speaker 2:I'd like to think that I'm an authority with pain, and so they gave me a shot of morphine, which certainly helped it to go down. But my fear while I was driving myself to the hospital was having a massive coronary. That would just shut me down. And then where's my car going to go? Right, because when that happens you go down immediately. I had the classic signs which told me I needed to get to the hospital, so it wouldn't fully occlude it. Yeah, had I been in the ambulance and they had hooked me up to the EKG and not seen the classic cardiac rhythm on the monitor, they probably would have just taken me to any hospital, and there's no telling how long that would have delayed me getting to the emergency room.
Speaker 2:Long story short, it was a blood clot in one of my stents. I've got nine coronary stents due to the three previous heart attacks. They were able to angioplasty, opened me up, spent a couple of nights in the hospital, got out. I've been in kind of a lazy mode for Per, my doctor. He said just take it easy for at least four weeks. It takes the heart about that long to really heal. So I've been. My yard is like this high right now because I can't get on my mower. I hate paying for people to mow my lawn because I actually get pleasure out of riding my lawnmower and mowing.
Speaker 1:You have a son. What is he doing?
Speaker 2:He's got a broken wrist.
Speaker 1:That's right, we were going to get to that.
Speaker 2:That was the second part of the equation. But to wrap up my cardiac situation, I went to see my cardiologist last week and the unfortunate news for me now is that the next time I have problems we have to do a bypass, which means the big sternum cut. It means a very long rehab, it means a scar to match the one on my back from my spinal cord injury. Not looking forward to that, but it motivates me to want to get back into shape and be in the best possible shape that I can be in, for when that happens my recovery will be shortened as a result and I can push myself relentlessly through pain and through the effort of recovery. So it's going to be tough and I can push myself relentlessly through pain and through the effort of recovery. So it's going to be tough.
Speaker 2:And I told my sister. I said I don't know how many more comebacks I have in me. I mean, it's just I've had back after setback for my whole life since I was 20. And it's kind of like a cat. You know the nine lives of a cat. You can run through them so quickly and only have so many. So I'm doing my best to recover.
Speaker 1:The person that's made you to be the incredible person that you are.
Speaker 2:Oh, thank you.
Speaker 1:I also want to throw in a little humor for a second. So my husband I think I've told you before grew up in Pryor Oklahoma.
Speaker 2:Yeah, yeah.
Speaker 1:And he had a grandma that I believe had heart attack situations too and she had to have the big cut. And one time he went into the hospital to see her and I think you're going to appreciate this and he looked at her and he said, grandma, they might as well just give you a zipper.
Speaker 1:They have to open you up so much velcro or something just picturing, you know, 10, 12 year old him saying that to his grandma and I guess she thought it was hilarious and she said don't you make me laugh, you little shit.
Speaker 2:Well, you know, laughter I mean, it's so healing. But and I've got a story that kind of goes along with that when I had my original accident, when the tree fell on me and crushed my face and my back and everything I'm in the ICU and two of my friends, I went to two different high schools, one in Widener and one in Tulsa. I had two friends that friends that came up at the same time and I could have two people in there at any given point in time and they didn't know each other. And they walked in and of course my face is all swollen and I'm in this bed that's rotating side to side to keep the fluid from settling in my lungs for pneumonia. And one of them looked at me and the only thing he could think of to say in this very difficult situation was did you have clean underwear on? To which my other friend, who's the joker, said I bet he didn't after that tree hit him and we just all three started laughing.
Speaker 2:And that's the point that I knew, as dire as things were at that particular moment in time, I knew everything was going to be OK If we could laugh in that difficult situation. Knew everything was going to be okay If we could laugh in that difficult situation. Everything's going to be okay and from that point forward it wasn't sad that I was in there and I was paralyzed and near death was. You can find reasons to laugh even in the most dire of circumstance. So, yeah, I like this segue because I love telling that story. It's just such a great one. And the whole underwear thing was his mom always said always go out in a clean pair of underwear because you never know if an accident is going to happen and you don't want dirties on when they cut them off of you.
Speaker 1:It's a great point. My husband even would tell our kids all the time if they fought us on a shower or a bath you don't want to be the stinky kid in school. Those two things kind of go hand in hand. You don't want to be the stinky person and you don't want to have dirty underwear on. I mean, unless you've been camping or hiking, there's not a good excuse for that.
Speaker 2:True Shipwrecked, I guess Right.
Speaker 1:Exactly, exactly True. Shipwreck, I guess. Right, exactly, exactly. Okay, so you were going to tell us about the rest of what's been going on in your world. I mean, it's so crazy everything that's been happening that we can't even make it up.
Speaker 2:I know right. I told a friend of mine that asked me how I was doing the other day. I was like, oh well, guess what? You know, there's a black cloud over my house for some reason, but it's going to go away. So yeah, the second episode, or trip to the emergency room came after my son came to me on Saturday night, maybe two o'clock in the morning. I wasn't sleeping. I was in my bedroom sitting in a chair watching my phone kind of flicking, and he goes Dad. And I was like, yes, I think I broke my arm again, Very nonchalant, right. And I was like, yes, I think I broke my arm Again, very nonchalant right, not. Like, oh, my gosh, that's just kind of the way we're built. And I was like, okay, let me look. And so I looked at it. It wasn't out of place. I didn't see there was no open fracture, just an abrasion he had had. We have these things called the line scooters that you can run and then ride around town.
Speaker 2:They're really kind of a big thing here. Now they are here too. Oh, okay, yeah, they're really. They're super fun, but they're super dangerous, obviously. Because he said all I did was kind of look back. And when I looked forward I went down and he got his right wrist and I said well, let's, you know it's not an emergency, You're not bleeding out. You know you're in pain, I get it, but it's not displaced, so let's wait through the night and see how it feels. So he came to me the next morning and said it's not getting any better, it's all swollen, it's very painful. So I got cleaned up, we went to the emergency room and, sure enough, he had like a hairline fracture on his radius. We call it a foosh fallen outstretched hand.
Speaker 1:Yep.
Speaker 2:And so he, um, he has a temporary brace, a splint rather, and we're getting him a brace. It's not really necessary to be cast. Six weeks it's going to be healed, it's not going anywhere. But again he was prescribed pain medication, lortab, and he only took one and the rest he was like I don't need them. So, which was awesome. Just shows how tough you know he is as a lovelace. He gets it after his old man.
Speaker 1:Runs in the genetics I know right.
Speaker 2:Then, a week later, here's my third trip to the emergency room. I was repairing the dryer. My son had dried some clothes and didn't take the lint out of the lint basket. And my son had dried some clothes and didn't take the lint out of the lint basket, and so it's going to stop from overheating, it's going to shut down, right, there's a reset button. So I was trying to do the reset repair. I pulled a little it was like a little cap, a round cap I pulled it off and you can reach in there and it's kind of an awkward angle to get to the reset button.
Speaker 2:And because my legs, from the knees down, don't really work very well, it's hard for me to balance when I'm stooping. I lost my balance, I pulled my arm back and I ended up with this nice little jagged scar and nine stitches. So because it was just filleted open, I was worried that I had gotten a tendon because it was right next to my extender for my thumb. I went ahead and went into the ER and, you know, they put me on antibiotics, they sewed me up, shipped me off, and so, yeah, that was my third trip, but one more that I didn't tell you about just maybe a month and a half earlier, my youngest son was in a soccer incident where he went down and grabbed his knee. We have video of it. It was a really dramatic scene when he got hit and at first I was worried about it just being a sprain or you know, maybe an ACL or meniscus. And a couple of days after he went to see a doctor and they said, no, everything looks great. You know, we'll just kind of let you go. And it just kept getting worse and worse. And they finally went back in and said let's do an MRI. And sure enough, he had an ACL tear, he had a meniscus tear and he had a bony contusion on his femur that went very deep. And the doctor, when they went in to get the results of the MRI, said I have no idea how you're walking around on this. This would put so many people down and you're just acting like it's just kind of a, you know, sort of achy. But we need to see what's going on. But it was a significant tear, yeah. So you know, I did a genetic DNA test years ago to find out. You know my heritage and we're mostly Irish and Scottish and if you know that that type of people are very, very tough, and so I think that's where we get our toughness is from our Irish and Scottish heritage, because I think I'm more than 80 percent of both, with a smattering of some European countries in there as well. Wow. So, yeah, lots of drama and lots of medical bills going to be hit in the mailbox, but you know, I'm glad that nobody was hurt significantly.
Speaker 2:I survived my heart attack. This little cut on my wrist is going to give me. I'm trying to think of what kind of killer tattoo I can do with it. You know, just around it, right? And I've thought about doing an episode on all my scars, because I have many. I've got this one, which is pretty prominent, from my accident where my forehead was fractured and basically split open. But yeah, I could go down the list of all my scars. I had a nail go through my leg. I got cut with barbed wire on my wrist when I was a kid.
Speaker 1:I mean yeah.
Speaker 2:So I'm a medical.
Speaker 1:I'm kind of thinking maybe you know something to do with your logo for the podcast on your wrist would be kind of cool.
Speaker 2:Yeah.
Speaker 1:Like the fish.
Speaker 2:It almost could look like a spider I guess you know what I mean like a arachnoid spider tie-in oh, I don't see you as a spider person, though I've got on my bike um one of my, so I've got several. The head, uh, tube cap is a spider, kind of like spider-man, because anytime somebody asks me about my disease and I say arachnoiditis, they're like like Spider-Man. I'm like, yeah, I mean sort of.
Speaker 1:You know, that's actually a kind of a genius idea. I feel like maybe a future graphic for your podcast. Yeah, I don't know, I don't know.
Speaker 2:You know, I might do, that'd be fun. I might do this guy.
Speaker 1:See, that's what I was talking about. I wanted to call it an angler fish, but I don't know what it's called.
Speaker 2:It is an angler fish, yeah.
Speaker 1:I'm actually right.
Speaker 2:Yeah, it's the one that has the little light that draws fish in right, and then it just that's how it gets its meal.
Speaker 1:Maybe he needs to be eating a spider.
Speaker 2:There you go yeah.
Speaker 1:I don't know. We could talk all all the things. Graphics right. We both have a lot of fun.
Speaker 2:You have to. I think you know the thing with tattoos. I have one, but I got back in the eighties. It's it was to in remembrance of the, the first triathlon that I did. So it's old, you can't even read it anymore, but it still has major significance to me and most of the time I don't even realize that I have it, but until somebody says, oh yeah, you have that killer, you know? Triangle tattoo.
Speaker 1:Kind of wonder if, if they could bring it back, salvage it with some some touch up or something.
Speaker 2:That's a good idea. I almost would like to do that. Especially since I discovered my history in sports with triathlon not so long ago, it has even more meaning to me now.
Speaker 1:Yeah, well, that would be really cool. If you decide to do that, let me know. Okay, yeah people might not realize it, but I love tattoos and if it wasn't for my husband trying to reel me back in, I'd probably be covered in all kinds of crazy things, per his wording because I'm kind of like, ooh, I like that and Ooh, I like that, yeah, and he's always like, really, Somebody told me years ago that if you get your first tattoo, they become addictive.
Speaker 1:My brothers warned me about that. I got my first one when I was 18. I was still in high school, but I was so excited that I was old enough and I wanted to be like my two big brothers and be really cool and have a tattoo. So me wanting to be really cool, thought okay, my birthday's on Valentine's Day, I'm going to get a heart on my ankle, okay, and it's like I was trying to be really cool like my big brothers and I got a heart.
Speaker 1:I had no pain tolerance back then. I was practically in tears. There were two of my guy friends in high school that went with me to get it because they wanted to watch and I mean this tiny thing that should have taken maybe 10 minutes, if even that, and they had to keep pausing because I was being such a baby. I am very proud to say I now have, I think, eight tattoos and most of them I was able to sit still just fine. I sat and played a game on my phone through one about this big on my back. It's quite large. Just sat there and played a game for three hours. So my pain tolerance is much improved.
Speaker 2:Yeah. So the reason I chose the location for my first tattoo or my only tattoo for now it's on my left ankle it's because, from my accident, I had no feeling in that area. So I thought, yeah, I'll just go in and, you know, put it in that location, which I did and the guy that was giving me the tattoo was just like man you must have a high pain tolerance because it was right on the fibula where he was doing it and you know it's just going to bounce off the bone Right, and you know it's just going to bounce off the bone right. And I was just like, yeah, you know I was playing it off, like I was so tough, but no feeling. So they could have cut, they could have sliced me open, it wouldn't have mattered.
Speaker 1:Goodness. Well, I have one on the top of my foot, and that one was a painful one, with all the little tiny bones.
Speaker 2:Yeah, yeah.
Speaker 1:I somehow did that one, but I would never do it again, yeah, so okay, Anyway, way off subject. So we were talking a little bit before we started recording about how ridiculously expensive medications are and for those of you that may have listened, we have a previous episode. It's called Breaking Down Barriers to Medication Access and in there I had interviewed at the Universal Drugstore, which I do have a coupon for. If you go back to that episode it's Jenny 2025. You get 15% off. There's a link and everything. I was sharing that with Steve because I'm hopeful that not only can you bring them on your podcast and interview them, but also that maybe it can be valuable and helpful to you. Let's talk about why we were talking about that.
Speaker 2:Yeah. So going back to my heart attack, as a result of it being a blood clot that had occluded the vein or the artery, my doctor changed up my blood thinner. I was on clopidogrel and he changed it over to a drug called Berlinta. Berlinta is very expensive, and how I found this out was I rolled through the pharmacy, pulled up to the window and said hey, I got a prescription for Steve Lovelace and they said sure, and they pulled it out and they said, oh, Mr Lovelace, that'll be $490 sticker shock. So I go onto my app. I use a pharmacy called Optum. It's an online pharmacy.
Speaker 1:I have that one too.
Speaker 2:Yeah, much cheaper than going to your local pharmacy. And the thing about medications is, when I pulled it up, it showed me all these other pharmacies and all these different prices. Nobody's consistent with their pricing. No, they're not. Cp could be $1,000 and Walmart could be $20, right, it's whatever they want to put on there. When it comes to a life-saving drug like a blood thinner for somebody like me that has nine coronary stents, are they gouges, right? It's kind of like when they had the whole insulin thing that happened with pricing. With insulin, I mean, you have to have insulin or you're going to go into a diabetic coma and you're going to die. Right, and insulin has been around for so long, it's so cheap to produce, but people want to make money off of it.
Speaker 1:And then you have to worry about people rationing it.
Speaker 2:Absolutely. And this kind of goes circles back to there was a guy named Martin Scorelli, pharma pharma boy. Do you remember him in the news?
Speaker 1:Doesn't ring a bell.
Speaker 2:Okay. So he found this drug that had gone off its patent and he either bought the patent or started manufacturing the drug, bought the company that produced the drug and he took this drug that was made for pennies and sold for a few dollars and he jacked it up to beyond a thousand dollars. Why? Because he could and because he knew people needed it, and I don't know what the drug was or what it was for, but it was a specialty drug for people that needed it for lifesaving measures, right, just to sustain their life. And so he went out and just screwed them over just to make a buck, I think one of the things. When he did get indicted, he did go to jail and when they went, when the federal government kind of went and seized his assets, they found this one record that was I forget what the name of it was, but I know it was from the Wu-Tang Clan, which was a rap group back in the 80s, very, very popular amongst people that liked hardcore rap back then. The record was never released, so it's a very, very valuable item because it's one of one, right.
Speaker 2:So this guy's making all this money and he's buying needless crap just to fund his fancy lifestyle at the expense of people that can barely afford the medication to stay alive. So that's my soapbox. So anyway, my Berlenta story goes even further, because when I saw my cardiologist and I told him I was like, look, I can't afford the Berlenta. I mean it's you know, I'm on a fixed income and as much as I want to live, I have to pay my bills to stay alive. And so he goes. Well, they have a generic version. Try Ticagrelor, I think it's called, and so when I went and looked that up on Optum, it's like $2 cheaper than Berlant as a generic.
Speaker 1:Oh my gosh.
Speaker 2:I mean it's just crazy. They do hand out coupons. They have a coupon on their website because when they do that they know they're overpriced, right, they're going to try to get you onto the drug and then they'll give you this coupon for a couple of prescriptions and then the coupon goes away. Well, this one is only for commercial insurance and I have Medicare, so it does not work for Medicare.
Speaker 2:Medicare is basically charging me five hundred dollars for the drug roughly and they're absorbing. I think that the total cost is twelve hundred dollars for the doses that they were trying to give me. But seriously, yeah, I'm at that point where I'm having to choose between a drug that will keep my vessels from clogging up with blood clots and having the money to pay for food and bills and electricity. I mean, it's one of those classic stories that they talk about, right? I never thought I would be here, but yet here I am.
Speaker 1:Yeah, and if Andy were here, what she would say to you right now is how did we get here? And we're doing some segments on that this season. But it's exactly that. How did we get here? People can be so money hungry and it's ridiculous because you're playing with people's lives and it's disheartening.
Speaker 2:Unless it's your life or the life of a relative or a loved one. People just don't care. I mean, the general majority of the population don't care because it's not affecting them. It's not, you know. They care about getting to work on time, they care about getting their paycheck, they care about, you know, paying their bills and doing their thing. But when it comes to other people and their suffering, that compassion is basically you know, they're not next to me, I don't know them, so why should I work?
Speaker 1:Exactly, exactly.
Speaker 2:Yeah, that's kind of dark. I apologize.
Speaker 1:No, no, no, no, no, no, no. You know, sometimes that stuff is super important for us to share too. As much as you and I always like to be the light and the positive, sometimes we got to talk about the negative too, and there's plenty of that in the world too, but I think that's why you and I primarily focus on the happy and the joy, because there is so much yeah.
Speaker 2:And you have to give the negativity. You know it's time in your thought process just to make the squirrel cage turn right. And a therapist told me a long time ago it's like give your problems time in your mind and then shut it off and get on with your day. If you keep suppressing it, it's always going to rise and bubble to the top and it's going to ruin everything else. But if you give it its 10, 20, 30 minutes of processing throughout the day, the week, the month, whatever, and then you get on with your life, I mean it's been the best advice that I've ever received. It's kind of like that whole process of I can only control what I can touch in my three-foot circle.
Speaker 1:Exactly.
Speaker 2:Yeah, what Sarah and I are trying to do, which is we want to get in front of Congress and share our story of pain and suffering and all the problems that we have. These guys can solve these problems if they would just work together. You can move a mountain, one spoonful at a time, with enough people, and they're not allowing that to get done. What they're doing is they're piling onto the meeting more than anything. So, yeah, another soapbox. I mean I think I would do good in front of Congress. Honestly, I would not be nervous as much as I would be motivated.
Speaker 1:I think you would do fantastic. I would pay to be a fly on the wall. Thank you, because I think you have a gift for that. I don't think people realize it takes a lot out of me. I am a extroverted introvert.
Speaker 2:Okay.
Speaker 1:So larger groupings or situations make me extremely nervous. I've forced myself to be in some of those rooms and do some of the things and I'm hoping in time maybe I can get more confident and less scared. But I always look up to the people that have the gift to be able to do it, and I always look up to the people that have the gift to be able to do it, and I think you do.
Speaker 2:So here's a bit of advice that I would give you with respect to that. I had my first public speaking engagement, you know, with a semi-large crowd. It was back at my university, maybe two years ago, maybe three years ago, coming this fall, and I was speaking under one of my professor's lectureships and I was not initially worried about it, but then I started to think about it more and more. I did not want to fall flat on my face and then all of a sudden it came to me. I'm sharing my story, of which I'm the authority. I'm never going to get it wrong if I tell the truth and I've been telling it so much recently that I'm comfortable with it.
Speaker 2:So when I realized that it's not like somebody's testing me on something, like I used to go to sales meetings and we would have to get up and act like we were doing a mock sales presentation and there was always a lot of pressure because you didn't want to get it wrong and worry about having your job the next week. But this is totally different when you're talking about yourself or you're talking about the things that you know best, and so when you go in with that mindset, that attitude, it's really the first. Maybe 30 seconds or a minute is the most critical time, but that's when you crack a joke. That's always kind of the standard thing. If you can get the crowd to laugh, they've already bought into the fact that this is going to be good. Because you made them laugh. It was intentional.
Speaker 1:I think that's a really good point. And last November, michelle Crow and I not the singer, the one in the RA world, I know, I always have to preface that, not the singer, but the RA one we were speaking at a luncheon at ACR, which is a huge event from the American College of Rheumatology and it's for rheumatologists and there's thousands of people that attend this. We were invited to speak at a luncheon. They're presenting the awards for investigators for the Rheumatology Research Foundation. When they first presented the idea to us, they were going to have us up on stage, kind of podcast style, talking to each other, and I was like, oh, okay, I can handle that, we'll be doing this together. And then we get an email and they're like instead, we would like you to present on your favorite investigator studies that you've been watching and hearing about, and so we'd like you guys to do that instead. I instantly froze because it was okay. You had me doing my comfort thing, the thing I feel I'm good at To now I have to talk about these studies that are going on and very large words. I'm glad I didn't back down. I'm glad I didn't freak out, especially knowing that this was going to be quite large.
Speaker 1:We had fun and we did start with jokes. So that's where I'm going with it is. We did start out with jokes because I thought to myself, okay, all the people that I enjoy listening to, even the doctors, they start out with something kind of funny and it helps get the crowd paying attention, gets them filled with laughter, gets you a little calmer because you're filled with laughter. And so I came up with this whole script of puns for us to share throughout our little talk, because we had 15 minutes that we were going to be up there and I'm proud of us. I'm proud of us for doing it, especially when I saw that room room. When you walk into this big event room and you start seeing the giant round tables that are going to be filled with people and you see how many tables it's going to be, your jaw kind of drops to the ground. I was like, oh, this isn't like a little luncheon, this is a big luncheon and it was fun. We had a lot of fun and highly intelligent people too.
Speaker 2:So you know that's. That's a whole nother level when you're talking to a room full of rheumatologists. Wow.
Speaker 1:You know it can be intimidating, it can be super intimidating, but you know what. They're people too, and they get just as nervous too. And and that's what I've learned going back to some of these, because they are you get some of them aren't rheumatologists, some of them are, like they have PhDs but not in the medical area. They do study work. I feel like I'm butchering it, but so you get all kinds of different people in there, but they're all highly educated and some of them are even more afraid than I am, and some are gifted speakers, some are hilarious. So it just goes to show it doesn't matter how educated you are. We're all people. At the end of the day you are, we're all people.
Speaker 2:At the end of the day, yeah, I think the big thing is not avoiding it, forcing yourself to kind of go through it and then learning the fact that, hey, I made it through this, so give me another right, and then your comfort just becomes. I think it would be like a Michael Jackson type level comfort where he didn't get nervous right. He just kind of did his thing because the spotlight had always been on him. Therefore, he was kind of thrust into that and that was just his life. And when it comes to life and your routine, yeah, you may have a little bit of nervousness, just all depending. But once you start talking and then you hit that comfort zone, it's like hitting cruise control. It just happens and you know you're your own authority and when you are your own authority you're never going to get it wrong.
Speaker 2:Thank you for joining today. I know this was completely unplanned. You were actually going to join me to interview someone today.
Speaker 1:But they had a sick child and we decided to just run with it and make it our own. Today, I'm your wingman. Today, you are my wingman. I need to give you a nickname. Yeah Little Spider-Man. Oh my gosh, my grandson would be so excited. He loves Spidey.
Speaker 2:Yeah, yeah, I was a big Spider-Man fan. Stan Lee, yeah, classic classic guy. That guy had such an imagination Wow.
Speaker 1:Absolutely Well gosh, until next time. Yeah, so, listeners, no matter where you are in your chronic illness journey, and whether you're newly diagnosed or years in this community, this community is here for you and you are seen, you are heard, and you are definitely not doing this alone.
Speaker 2:Yeah, it takes a village even especially with, you know, critical illness and chronic illness especially. I'd like to mention this Thursday I believe we're still on schedule to go live with Rare Patient Voice, who we have recently collaborated with, as I know you have as well. So I think we're going to do an Instagram live, and it's actually on my third birthday. We're going to do an Instagram live, and it's actually on my third birthday, so it's going to be quite a treat for me to actually document that particular day, especially with the passion that I have for trying to help people with chronic illness elevate their lives, find laughter when there is mostly darkness and just try to bring people on board with you know, accepting what they have to deal with, not regretting it.
Speaker 1:I'm proud of you, I, I, I'm proud of you. I'm enjoying watching all the work that you're doing and watching you shine, so keep doing it.
Speaker 2:Thank you so much, as I am of you as well. Thank you, thank you.
Speaker 1:Well, listeners, until next time. Don't forget your spoon.
