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
Defying Limits: One Man's Battle with Arachnoiditis
Steve Lovelace's journey with arachnoiditis demonstrates the remarkable strength of the human spirit when faced with seemingly insurmountable pain. When his neurologist delivered the devastating diagnosis in 2014 with a solemn "I'm sorry," Steve realized his life would never be the same. This rare disease, ranking at the top of the pain scale, forced him to abandon his career as a traveling salesman and reimagine his entire existence.
The roots of Steve's condition trace back to 1982, when a horrific accident left him temporarily paralyzed from the waist down with three crushed vertebrae. Though he defied doctors' predictions by walking again, the trauma planted seeds for future suffering. As mobility issues and excruciating pain gradually took over, Steve initially followed the traditional path of pain management through medication. But after years as "a zombie still thrashing in pain," he made the bold decision to quit all medications cold turkey, enduring withdrawal that he describes as worse than his original accident.
What makes Steve's story truly extraordinary is his refusal to surrender. He categorizes his days as "good days, bad days, and survival days," strategically using each to maximize his life despite constant pain. On better days, he pushes his physical boundaries through endurance sports, riding his bike with ankle foot orthotics and walking with forearm crutches. He recently completed a 5K and is training for a quarter marathon, demonstrating that limitations exist primarily in our minds.
Steve's golden doodle Shelby provides constant companionship, particularly on difficult days when PTSD compounds his physical pain. His journey has evolved into a mission of inspiration as he writes a book about his experiences and pursues motivational speaking. Living by the mantra "Don't say I can't, say I'll try," Steve shows us that true resilience isn't about avoiding suffering but transforming it into purpose.
Listen as Steve shares profound insights about family dynamics with chronic illness, the pitfalls of the medical system, and finding meaning beyond diagnosis. His story reminds us that even in our darkest moments, we can choose how we respond to adversity.
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Welcome back to another episode of my Spoonie Sisters Podcast, the space where we uplift, educate and empower those navigating life with chronic illness. I'm excited for today's conversation because we have the incredible guest joining us, someone whose journey is a true testament to resilience, perseverance and finding purpose beyond a diagnosis. Today we're sitting down with Steve Lovelace, a devoted father, former traveling salesman, endurance athlete and passionate advocate. Steve's journey has been anything but easy. Diagnosed in 2014 after unexplained pain and progressive mobility challenges, he was forced to leave his career and completely redefine his life. But instead of letting the diagnosis define him, steve chose to fight back with persistence, perseverance and perspiration.
Speaker 1:Through endurance, sports, journaling and advocacy, steve has found ways to not only manage his pain but also inspire others facing similar challenges. He's currently working on a book about his experience and is on a mission to raise awareness about these often overlooked conditions, bringing much needed attention to the medical community and beyond. In this episode, we'll dive into his journey, from the challenges of daily life with a rare disease to the power of movement, mental health and finding joy even in the face of adversity. Plus, we'll hear all about his aspirations as an author and speaker and what keeps him pushing forward every single day. Steve, welcome to the my Smiley Sisters podcast. We're super honored to have you here.
Speaker 2:I'm more than honored beyond to be here to share my story with you guys. I've listened to some of your podcasts and I know that you're advocates as well as me and hopefully you know we can share both of our stories and, you know, if we touch one person out there, that's the difference that makes me different. I mean, that's what really counts.
Speaker 1:Indeed, we've done a formal introduction, but can you give our guests a little bit of a background of what kickstarted your diagnosis journey and a little bit about your diagnosis?
Speaker 2:Sure, my diagnosis of arachnoiditis, which is a rare and extremely painful disease, it's on the chart of painful diseases. It's up there at the very top. I was diagnosed, as you said, in 2014. But the journey before that, and really kind of the epicenter of what happened to me, was an accident in 1982. Cut in firewood tree, split in half, did what they call a barber chair. The tree came together on me. The two halves came together on me, instantly, paralyzed me from the waist down, brushed my face, bruised my heart, brushed my left wrist, left me just clinging to life at that point in time. That was really what I think, the start of my journey with arachnoiditis. It took many, many years Obviously that was 82, and it took until 2014, when I was diagnosed, for me to really realize that something was going on.
Speaker 2:I started having, as you said, mobility issues. My foot got worse. My left leg, which was always my strongest, started to get weaker and weaker. My muscles started to atrophy. I started to lose bowel and bladder function, which was a really big eye-opener. Finally, the pain got to the point where I was missing so much sleep at night. I couldn't lay down without being in the excruciating pain. If I went to the doctor, I was afraid to get the diagnosis. It's one of those things where you don't want to know the worst. So I finally just submitted, went in to see a neurologist, did an MRI, which is the only way you can diagnose serotoninus.
Speaker 2:When the neurologist came in, this is when I knew I was in for the living hell. He came in and he hung his head, literally just shook it side to side and said I'm sorry. It almost brought me to tears because I didn't know what to expect. He said you have a disease called rheumatoiditis. I'd never heard of it before. I'd been in the medical industry for many, many years to that point. And when he said that there's nothing we can do for you, just give you medication, kind of treat you along that line, but you have to learn to live with it. I asked him how many cases have you seen in your career? He said five. That's when I knew I was dealing with something relatively rare. Came home immediately, did my Google search on arythroploiditis and there was very little on the internet back in 2014 that I could buy about this disease. Since then there's been a lot more. I bet it's turned out that on the internet there's a lot of groups on Facebook where you can go and learn, commune with people with the same disease and find out probably more that way about how to deal with what you're going through, how to deal with the pain and some of the small things that the doctors may or may not be able to tell you or have never even thought to tell you about the disease.
Speaker 2:But I've been through a journey of nearly every pain medication that you can imagine. Got to the point where I was taking so many that I was just basically a zombie that was lying in bed still thrashing in pain, and I knew that the medication was doing me no good. So I quit them all cold turkey, against medical advice. It probably was one of the most difficult things that I've ever been through. That's even comparing it to an accident in my recovery back in 82. Because when your body is revolting from wanting that medication and you're going through those withdrawals and you've been on the medication for so, so long and I've been on some of them for about 10 years it took me at least three years before I felt low again. I kept having recurrences with the medications. Once I got clear of that, life was like one of those commercials where you have this dark screen that shows life with whatever you're dealing with, and then the screen is removed and you have all this clarity. That's when life truly began for me again, and that was probably 2017, 2018 is when I had that moment of clarity after I got off all the medications. Since then I've never looked back.
Speaker 2:I've learned how to deal with my pain. I know that I have good days, I have bad days and I have survival days. On the good days and the bad days, I take advantage of what my body's capable of doing. So I push myself with my endurance sports, with walking with my forearm crutches. I ride my bike utilizing my AFOs ankle foot orthotics to help stabilize my legs while I'm on the bike, knowing that if I don't push myself and let myself go, my whole body's going to atrophy and it's going to revolt again. So I push through the pain.
Speaker 2:But it's those survival days that you know. I kind of hunt them down, and that's when I journal, that's when I read, that's when I watch TV. I do anything that I can to distract myself from the pain, because it's so intense and to describe it all, my pain is in my right foot, on the lateral aspect. When I have the intense pain, it feels like it's in a vice with needles that it's just being pranked on. And then there are times when it feels like I have an ice pick that's shooting straight down the shaft of the toe. It's like a hiccup. It just comes and then it goes. And then it comes and then it goes.
Speaker 2:But I know, even on those worst survival days, I'm going to be able to get through it. It's not going to kill me. I have learned that I'm good at suffering. I'm really good at taking extreme pain and turning it around, because when it's over I know that I have to take advantage of those days. Once it's passed, I push myself and that's kind of my mission in life is to show people that your small aches and pains are nothing compared to being able to take advantage of life when you don't have those. So you know, look beyond those bad days and look for those days where you can take advantage.
Speaker 1:You know. Look beyond those bad days and look for those days where you can take advantage. Did you mentally process receiving the diagnosis that has changed the course of your life? What was that mental acceptance process like?
Speaker 2:for you. It was tough. It was many, many weeks and months of realizing that I have a rare disease that cannot be cured, that I just have to live and deal with. One of the quotes that I read is from a physician that knows about this disease said that the difference between having a right myeloditis and having cancer is that death ultimately comes and sometimes comes quick with cancer, and your suffering is over, whereas with the right myeloditis it's not going to kill you. It may shorten your life to a bit, but you're just going to have to endure the pain, day in, day out, nonstop, and it can get worse.
Speaker 2:And once I realized that I had to deal with it, my mental toughness, which is kind of my superpower, just kicked in and I realized that if I can let the disease choose to guide the direction of my life, or I can take control of myself and I can make the disease choose to guide the direction of my life, or I can take control myself and I can make the most of it, and I think that I have. I started to journal a lot more and write my book, I started doing sports more and it's being able to get out and do all that that has brought me a bit of attention. I have a small platform that I've come to realize that if I tell my story and I can inspire people, that's really my purpose, and maybe that's what God's purpose was for me to put me here with this crazy, horrible disease, so that I can show others that life doesn't end when you get this diagnosis. It truly begins again. And once I accepted that which again took quite some time that's when my life started over.
Speaker 3:What does a typical day look like for you now, compared to before your diagnosis?
Speaker 2:They're all different Today. Well, let me start with last night. I knew there was a storm at the end. Storms affect my pain, it increases my pain. So springtime is really kind of a tough season for me here in Oklahoma, with all the storms that we're through, with all the spring rains. The last night it was up and down, up and down I slept in a chair because I couldn't lay down in the bed Numerous times where I knew that I wasn't going to be able to get back to sleep. So maybe around 4, 35 o'clock I was up making my coffee, scrolling on my phone, got up, maybe up and out of my chair around seven o'clock, got cleaned up and just kind of piddled around the house.
Speaker 2:Today I lifted some weights, which I typically do, you know, some light weightlifting just to keep my body in shape Made a little lunch, did a couple of chores around the house. I did some dishes, which sometimes I can do it, sometimes I can't. I mean, leaning over the sink to do dishes can be kind of a chore, but typically I try to get out and do a short walk with my golden doodle Shelby, put her on a tether around my waist and then, you know, I tool around the block and something to get my endorphins pulsating through my body, because that's truly my pain medication these days. You know lots of TV on the bad days when I can't do anything, a little bit of journaling, but typically if it's a really bad day, a typical bad day, I'm up down, up down, lay down, sit, stand, just because you can't find a comfortable position.
Speaker 3:So yeah, I can relate to that. I think the more we're in pain, the more we're up down. We're all around because you're constantly trying to find that comfortable sweet spot, right yeah, and you might find it.
Speaker 2:It might be five minutes, it might be an hour, but it's worth the try. Yeah, any small reprieve from pain is a welcome moment.
Speaker 2:Uh-huh, and then when it completely passes and you're to that level where my level of constant pain is around a five, I hesitate to say that I may be up and down from this chair all the pending, but when I have these conversations it does take me right off my pain somewhat, so I can typically get through a good call. But yeah, you look for that sweet spot and it's very small. It's like a needle in a haystack sometimes it's definitely worth it, though it's very small.
Speaker 3:It's like a needle in a haystack sometimes. It's definitely worth it, though. Do you have what I would call a spoony toolkit to manage your unpredictable flare-ups and impact on your daily routine?
Speaker 2:I haven't really thought about that, but I would say yes, to a certain extent. I try to on my bike, no matter how long I ride, for I'm pain free. I'm having one of the worst, absolute worst days. It's hard to even put the shoe on. I can't even let my foot touch the air because it's so sensitive even to the air at times. The minute I take a sock off, I'm just in extreme pain, even on a good day. So, needless to say, when socks stay on, that's one way that I tend to cope with that. And then, of course, when I'm sitting and I'm in pain and I'm just thrashing, I just tend to, as I said, up and down. I'll pace around the house as much as I can to take my mind off of it, sit down for maybe another five or ten minutes, and those are really the only ways that I can cope with the pain.
Speaker 3:Do you feel like there's some socks that are better than others? Does that make a difference for you?
Speaker 2:I found the most awesome socks on Amazon. This winter my feet are consistently frozen but I have great vascular flow. We've done all kinds of peripheral vascular tests and they come back with great flow and there's no PAD. So I found these super thick slumps and they're so comfortable, they keep my feet so warm and it's not like a typical cotton. I wish I could show you. They're just all kind of fuzzy on the inside, twice as thick as a normal sock and they give me cushion on the inside. Twice as thick as a normal sock and they give me cushion on the bottom of my foot. More than anything, I think that there's like an air gap with the fluffiness on the inside of the socks. That really helps me tremendously. I've tried ComboFit socks, hoping that the ComboMe have. Yeah, so far these have been a blessing and I've already purchased a couple more sets because I go through them so quickly.
Speaker 3:I felt silly asking you about socks, of all things, but I think anyone with chronic pain we have things like that. That are our favorites. We have our favorite socks.
Speaker 1:Absolutely, absolutely I specifically could use those socks, because my feet are always icicles and they hurt because they're cold and I like a thick sock and I like a thick sock, I like a thick sock.
Speaker 2:Yeah, they're cheap, but they're awesome, so I'll send you one. Thank you, you're welcome.
Speaker 3:Do they have any kind of compression to them?
Speaker 2:A bit. Yeah, I've tried compression socks, but they're so hard for me to get on because my feet basically from the knees down I'm paralyzed to about 80% and feeling is pretty much all gone. From the waist down to the knees it's maybe another 25% gone. So when I'm trying to put a compression sock on it's really very difficult. I've got several that I've bought over the years, but they're so tight they just don't do me any good.
Speaker 3:Yeah, my husband's always trying to get me to get compression socks that help my ankles, but I have to explain to him it's not even the ankles, I just like a little bit of like a gentle hug around my feet, if that makes sense. I don't know what it is, it just feels good, kind of like compression gloves.
Speaker 2:Yeah, I'm feeling myself. They're very. They're not super tight. My ankles are so skinny. My ankles are skinnier than my wrists and I'm not a big guy. I'm 5'7", 140 pounds, so you can imagine how thin my ankle is. It's just literally bone, and tissue.
Speaker 1:So I want to talk a little bit about family and relationships. So you're a dad and I like when you smile If I say you're a dad and you got a smirk on your face. How have your sons inspired you or supported you on your journey since?
Speaker 2:All of these things have happened. That has been different from them. I'm sorry. They're the reason that we got our phone medications. They were very young just now 19 and 17, so still pretty young age-wise when I knew that I was the father that I wanted to be with the medications, I knew that I had to quit. They were my motivation. At the time they really didn't understand what a whole other part of the disease and the way that it affects the family. But my kids know that I'm there for them and I was picking them up from school and dropping them off at their mom's house Every day. They were in high school before they could drive.
Speaker 2:When I get in the car, it's one of the most painful things that I can do, because I'm stuck, I can't do anything. I mean that pain hits and it's in my right foot, which I use for the gas pedal I use for the brake. Stepping on the gas pedal is like stepping on broken glass. It's just extremely, extremely painful. And when I had had some of those days, my youngest son they would be sitting in the front would reach over gently, touch me on the leg and just tell me that he loved me, that he knows what I'm going through. I mean that means a lot.
Speaker 2:The worst thing about this disease and I will say pretty much with any disease, I can almost say with yours included not even knowing but it's worse on everybody else around us than it is on us because we learn how to deal with it on a daily basis.
Speaker 2:We can never get away from it and it affects them so much. I've missed way too many family functions because I've had those days where I couldn't get in the car, I couldn't drive an hour, I couldn't sit in uncomfortable places around. Numerous people want to go through what I'm going through and that's my biggest regret with this disease is missing out on that part of life being able to be there for all those things that matter the most. But I do know that I have the love and support of my kids. They know what I'm trying to do with my journey now. They support that and really if I can do one thing out of this, it's to motivate them to know that they're capable of getting through so much in life and they're capable of doing anything they set their mind to, because I've been able to do that and I'm trying to do that as an example to them.
Speaker 1:So you've been really open about how your illness has affected your family dynamic and, if you don't mind, I would like to ask what advice would you give couples navigating chronic illness together?
Speaker 2:Just understand that you don't have a perfect marriage anymore, you don't have a perfect union anymore.
Speaker 2:You're going to be broken together. And if you understand that neither of you are going to be perfect in any given way more importantly, with the disease and how that's going to impact you, just to understand that you know it doesn't have to be an eye roll on the third consecutive Christmas that you miss because you can't make it because of the disease. It can be as simple as a hug, and I understand, and with our technology today we'll FaceTime you and you'll be there virtually. You can add that type of layer to your family unit. Really, it's just understanding and the compassion, not necessarily asking how you're doing on any given day, maybe on your worst day, but when they see you suffer, they don't have to always come in and say how are you doing? Is there anything I can get for you? Because if you need something, let them know. You know what? When I need something, I'll ask, but you don't have to constantly be a safety net for me. Just knowing that you're there, that you love, that you're compassionate and that you care, that matters most.
Speaker 1:What do you wish that people understood the most about? How chronic illness affects not just the individual but the family dynamic? What do you wish people knew more about?
Speaker 2:family dynamic. What do you wish people knew more about? You just have to give yourself time to deal with learning how to make life happen with whatever disease or whatever condition that you have. You can't, you're not going to get it all up front. You may not ever get it, but you have to try to formulate a new life around your diagnosis. But it doesn't have to be central to the life, it just has to be a part of it. And you have to acknowledge that. The worst thing that you can do is not acknowledging that you have something and that it's going to affect you. And that's when anger sets in. And that's what I like to say.
Speaker 2:I come up with this term called an emotional dam, where if you hold everything in and you hold everything back, that dam can only hold back so much and eventually it's going to break. And when it breaks, that's when you lash out. And you know what Sometimes that's going to happen. Give whoever is going through it, give them the five minutes to go out in the backyard and yell at the top of their lungs. You know it's not at you, it's not at anybody in particular, and sometimes, when that lashing out happens, people really have to be understanding, but just acknowledging that you know you're in the pit of despair at times and that you're going to get through it with the help of those around you. I think that that matters most to be able to deal with it and, just, you know, get on with your daily life.
Speaker 3:What personal mantra or mindset shift has helped you push through your tough times?
Speaker 2:I came up with this saying with my kids a long time ago don't say I can't say I'll try. And that pretty much is my mantra for everything. I'm currently training to do a quarter marathon at the Oklahoma City Memorial Marathon with four of my britch know, and I've researched, you know who has done this and there's a guy online that does it with walking staffs, but not necessarily forearm crunches. But I like to push my boundaries and I like to find new areas that you know have never been done, just to prove to myself that you know what, despite not being able to balance myself without my forearm crutches, I'm going to go the distance and just pushing every boundary that I can.
Speaker 2:I did it with triathlon, I do it with cycling. I'm doing it with my forearm crutches. So last year was my first 5K in many, many decades and I used to run a six-minute mile consistently. Now I'm at 22. It's not a point of shame as much as it's you know what? 22 is the new PR for me and I can go out there and try to do 21 and 50. But it's just, you know, pushing those boundaries because life is not limiting me. It's opening more doors for me now than it ever was.
Speaker 1:So that's a great segue. How did you, how was that transition into sports, from high impact activities to finding new ways to stay active, to still enjoy the things and get some pain relief? Can we talk a little bit about how that transition was?
Speaker 2:Yeah, it was right before my diagnosis and I've always been an athlete my entire life, even after my accident in 82. I ended up doing triathlon three years after and that's when I became that second disabled athlete to have ever completed a triathlon back then. So it made me a pioneer in sports. I continued to do that up until the point when I got married and had kids, and that's when life kind of throws you a curveball Time gets limited, you focus, you focus on family. I was traveling a lot with my work, but it wasn't until I started feeling the first inkling of arytenoiditis, which was I just had this stabbing pain in my foot that was there constantly for a week, very intense. Then it went away for a couple of months and then it came back Again. It was kind of like hiccups.
Speaker 2:Through all that, I just kept looking at my body. My legs started to atrophy, my balance started to get worse. So I thought I've been sitting on the same line too long. I need to go push myself. I dusted off my old bike, I got it tuned up and started riding with my son. You bike, I got it tuned up and started riding with my son, and you're talking to a guy that used to ride 40, 50, 60 miles a day.
Speaker 2:That was, you know, back in the day, nothing to me. I get back on this bike after being sedentary for so long. I do a half mile, my heart rate's at 150 and I'm out of breath. I'm like this is not me. You know, this is not the guy that I was and the guy that I want to be. I just slowly continued to push myself and found that the exercise really started to benefit me. You know, I was preventing the muscles from atrophy, I was strengthening myself up and, more importantly, I was strengthening my cardiovascular system, trying to keep my heart strong. And so now, you know, I'm back on the bike for an hour or two a day, not every day, but most days I try to get on the trainer or I'll go out for a good leisurely ride. I'll walk my doodle when I have the ability to go out and walk, and we'll do, you know, 45 minutes or an hour, and it's not that I'm completely pain-free, you know, 45 minutes or an hour and it's not that I'm completely pain-free.
Speaker 2:You know my back. When I had my accident I got three crush vertebrae that were fused, so there's a significant amount of pain with that. There's definitely pain when I walk with my foot. I'm not pain-free when I'm standing, that's a hundred percent. But again, I continue to push myself and it's the 30 minutes or the hour after I get done exercising that I feel awesome. But that's what keeps me going is knowing that I'm going to have that feeling afterwards and knowing that I prevented my body from going two steps backward. I pushed it one step forward with my effort and I continue to maintain myself. And the cardiovascular heart says that I'm a 50-year-old I'll be 63 this year, so it's obviously doing me some good.
Speaker 3:Steve, what advice would you give to others with mobility challenges who want to stay active?
Speaker 2:I go back to that. Don't say I can't, say I'll try. Too many people that are in a wheelchair or have forearm crutches or use canes, that's an excuse not to do something. I would say the vast majority of people. That's an excuse to sit on the sidelines and say I can't because, say I'll try.
Speaker 2:I didn't think that I could do a 5k with forearm crutches, yet I did it. And the reason I did it is because it was a challenge. You know, I just wanted to push my boundaries. The ironic thing is I was one of two people that day that did that 5K with four on crutches. I did my best to try to catch up with that little gal that was in front of me. My sister was walking with me. I said let's try to catch up, because I want to get side by side with this person and say you're inspiring me as much as I hope I'm inspiring those around me. And she found me after the fact, after the race was over, and said that she knew me and that was, you know, quite a big thing for me.
Speaker 2:But you know, whether it's forearm crutches, the wheelchair, when I'm in a wheelchair you can bet that I'll be racing in a wheelchair. If you know, if I was laying on my belly on a belly cart, which I was in the hospital back in the 80s, I raced with the belly cart. The belly cart is, but it's basically a wheelchair. That is a gurney and you lay on your stomach and you wheel it just like you would a regular wheelchair. I did that was in the wheelchair or on the belly cart.
Speaker 2:In the rehab center I used to just scream up and down the hallways and the nurses would come at me and say Mr Lovelace, you have to stop, you're going to hurt yourself. I'm like no worse than what got me here in the first place. So let me push this. I could honestly, back in the day, do a wheelie with that belly cart. I might get the wheels two or three inches, but that was my challenge. I would say, if you don't think, you can look to others for inspiration and ask questions. I went from using no mobility aids to using a staff to using forearm crutches. Now I use a wheelchair, but I still run my bike, I still walk. I can't run anymore, but if I could figure out a way to run, trust me I would do it. But I do have a racing wheelchair in my shed. For the day when I can no longer ambulate or ride my bike, I will be racing a wheelchair and racing a hand-brake bike.
Speaker 1:Dave, what are some misconceptions about AA and CES that you want to correct?
Speaker 2:Life doesn't end after the diagnosis. Life truly begins once you figure out how to live with it. Some bodies are just susceptible to the disease and that cascade of it happening because it's an autoimmune disease, and once you have one autoimmune disease, you're pretty much prone to others, unfortunately, if there was one thing that you could change about how the medical community approaches your disease.
Speaker 1:What would it be?
Speaker 2:I think every, every physician, every frontline physician, whether it's an orthopedic surgeon which is probably going to know more about this than anything anybody or neurosurgeon or neurologist, but I think your primary care physicians all need to know that if somebody comes in with pain in their lower extremities and it's an electric shock type pain, and it comes and it goes. It intensifies with standing or with laying down, and it comes and it goes. It intensifies with standing or with laying down, feels like water running down your legs or you know, it's something along that line. Or with respect to CES, if they're having bladder control issues or bowel issues or numbness in the saddle area, they need to get an NL. That's the only way that you can diagnose this.
Speaker 2:I was reading in NRP magazine the other day. It was a multi-page story about this lady that had this pain in her leg after a back surgery and she started to lose function, to lose feeling, and went in and they diagnosed it as failed back syndrome. And that's really kind of a fallback diagnosis to anybody that has back pain or lower extremity pain after back surgery. You've got failed back syndrome. It's just something you're going to have to deal with. Why not do an MRI and get a definitive diagnosis, because the quicker you catch CES, ces can be reversed if you catch it quick enough, because it's basically compression on the nerves.
Speaker 2:Arachnoiditis can't be reversed once diagnosed early. There are methods to deal with it. I got caught in the late stages of it. I was kind of at the extreme end and there was really not much that they could do for me. But there are treatments that they can give that do help. They kind of slow down the progression of the disease. But if we could acknowledge this to the frontline physicians, primary care people that most people are going to see first off, and if that's the one thing that they can come away with to go get that diagnosis early, that would be the thing that.
Speaker 1:I would. I have another question because you piqued my curiosity While you were going through your diagnosis journey were you originally being treated for neuropathy?
Speaker 2:Yes, yeah, yeah, then, originally being treated for neuropathy. Yes, yeah, gabapentin did nothing for me.
Speaker 1:And so I would imagine, because for that class of drugs, the gabapentin, the Lyricas it can either make you hypersensitive or dull the nerve, and in your case did it make you hypersensitive, even more so to the pain receptor than you were.
Speaker 2:If I think back retrospectively, it's kind of hard for me to recall to be honest with you.
Speaker 2:I do know that I was on it, for I think I was 1,800 milligrams a day, so a very large study, yeah, and it initially turned me into a zombie Again. That was one of the drugs that I quit cold turkey. I just kept taking it and it did nothing for my pain. When I stopped taking it, pain was still there at the same level that it was when I was on the medication, so all I was doing was just putting chemicals through my liver and into my body that I didn't need, sadly. But yeah, neuropathy good, easy diagnosis for somebody that feels that tingling in their foot. But again, the deeper diagnosis would be to get an MRI, not necessarily diagnose it as neuropathy, but get a definitive diagnosis as to whether or not it is rheumatoid arthritis or chronic chronic syndrome.
Speaker 3:How can people support research for both of those?
Speaker 2:There's some research. The last research or study that was done was maybe more than a decade ago and it was using a drug called thalidomide, which is the drug that people are born. Well, they gave it to women back in the East and 60s for morning sickness and all of a sudden you had babies born with very small limbs or no limbs at all. Really it was a horrible, horrible drug, but apparently it had some sort of medical interest to somebody and they did a study with it. I don't think it went anywhere. I've been on the NIH website looking for studies for retinoiditis and even neuropathy but honestly, since there's not a cure and the pain medications are so prevalent that's really the diagnosis equals an open pharmacy to any kind of pain medication that you could ever imagine, which is fine. I mean, I had a pain medication doctor I saw twice. I stopped seeing him the second time because he said we'll just keep throwing drugs at you until they stick. I'm like that's no way to practice medicine. I'm here not for you being a dispensary of medications and at the time I smoked medical marijuana, which is legal here in Oklahoma, and that helped kind of take the edge off. I mean, if I could say it anyway. If my pain is like a spike, it rounds the spike up. The pain's still there, it's just not as sure, but it did help. He said you're going to have to stop that while you're taking this and I said, well, this is working for me. It's just not a show, but it did help. He said you're going to have to stop that while I'm taking this and I said, well, this is working for me. That's none. So you know what's the deal.
Speaker 2:And I think part of that was just they wanted to drug test and get their money from that. They wanted me to come in once a month for the drug test. They wanted me to come in once a month, throw that appointment money and they wanted to kick back from the pharmacy or the rep for the medication. And I've been on the inside of the medical industry. I know how it works and it's worse. Back in the day it used to be so corrupt. It's a little more upfront now where physicians have to acknowledge how much money they get from a specific company on the company's website, because it's a kickback and it's not right for the patient. Their advocacy is for the medication, not the patient. In my opinion, if anybody wants to do anything with research, I would be happy to donate my body to science. I'm already donating my brain to the CTE. I've had many head injuries and I know that there's probably some chronic traumatic encephalopathy. I get one on there. But yeah, we need research in this area.
Speaker 1:So you're writing a book and I want to talk about that. What has that process been like for you? Me, writing my book was very therapeutic. It was very therapeutic. So how's it been for you?
Speaker 2:Well, that's how it started for me was therapy I mean, writing is very cathart dial into. You know, the central story, which my central story is. The accident that nearly killed me, paralyzed me for a period of of time and then I defiantly told that the doctors I'm walking out of the hospital after they told me that I'd never walk again. I did walk out of the hospital. I took four steps with crutches. I proved them all wrong. I went on to make history in sports.
Speaker 2:I'm writing about that aspect. When you write and you'll notice, you expose yourself to the world. You expose yourself, your story, you expose yourself to criticism, naysayers, most of what I'm going to write, people are going to go. He didn't do that.
Speaker 2:Or creative license with the way I tell the story when I say I grew up poor and my father abandoned our family when I was four and my mother struggled in the 60s to raise two kids on her own with no help from them. And there were days where my mom tells this story my sister only got $500 for Christmas one year from our grandparents and we knew that mom was struggling to put food on the table and she heard us talking through my sister's door about what we could each do with our $5 to buy groceries, to buy a hamburger, because mom could do a lot with hamburger, you know. We could buy eggs because we can eat eggs for dinner and we can eat eggs for breakfast, and that's how poor we were. There was typically more space in our cabinets than there was food when I was growing up, so I can tell that story.
Speaker 2:But again, the neighborhood that we grew up in, which was a nice nuclear family neighborhood, we were one of a few families on the block that didn't have a father and you know that was a significant impact for me and I can touch on so many different things with my book and my stories. But yeah, it's hard to know what to focus on and where to start, where to end, how much detail to put into this, that and the other. But it is therapeutic. I'm going back over old memories that have long since been forgotten, so I don't bring tears to my eyes in a good way and a bad way.
Speaker 1:Yeah, so you said that you wanted to do some motivational speaking. What do you hope to achieve with that, and have you already have you started? Are we doing speaking engagements?
Speaker 2:I did my first at the University of Oklahoma Health Sciences Center, which is my alma mater. It was a year and a half ago and it was a huge honor for me because it was one of the professors that I had studied under. Gave my speech, I told my story and the great thing about this story is that I shouldn't have been in the program that I graduated from. My grades were horrible, but somehow this lady saw potential in me and I told her during the interview process if you give me an opportunity, I promise I won't let you down. I graduated at the top of my class not at the very top, but I was in the top of my class. She gave me that opportunity and when I told that story under her lectureship and some people connect to me after the fact and just tell me how moving my story was to them One young girl said that she had been training for the marathon at their Plum City Memorial and this gave her more inspiration to want to go do that race.
Speaker 2:Just hearing my story and knowing that you're fully capable of doing anything. So that's really the gist of my story is don't give up, don't give in. Go forward and find something difficult to do, because that's when you really discover most about yourself, is during the difficult times.
Speaker 1:I have one more serious question before we put you in the hot seat for the Fast Five. Ok, the Fast Five is all fun questions. Notice how I did the series of F words Jen, Fast Five, fun, OK. So the last serious question, though, is where do you see yourself in the next five years?
Speaker 2:I see myself on stage a lot. I see myself signing my book for people and not for self-recognition. As much as I want those same conversations. I want people to come up to me and say your story inspired me to do this. That's what, if I can say, all the suffering was worth one person coming up to me saying that they're inspired by my story. That's truly worth it to me. That's the price that I pay, going through everything that I go through, to hear that. But it's not for self-recognition or, you know, pat on the back. I definitely see myself out there telling my story, motivating the masses, because it is, even from my point of view, a moving story. I definitely want that to take place and I think with my persistence, perseverance and perspiration, I will make that happen.
Speaker 3:Tell us a little bit about your golden doodle, Shelby. How does she bring joy to your life?
Speaker 2:She's so awesome. She follows me pretty much everywhere I go. I can't go out the door without her scratching it if I close it behind. The funny thing about this dog is that I have a home health that comes in three times a week working on that, but also that we're trying to heal up for the past couple of years. She absolutely loves my nurse, my nurse loves her. I have a new wound care team that comes in. It's a male and a female. They tag team and they love Shelby and Shelby loves them.
Speaker 2:In fact I live on a property that's an acre and a quarter and she's got an underground collar that she can wear to kind of keep her in the perimeter. But she tends to do what I call go off-roading, where she is kind of a social butterfly and she'll go over and see the neighbor's dogs and my neighbor's dogs come over and see Shelby and it's just. We have such a great neighborhood. But for me personally, because I have PTSD on my bad days, she's right under my feet. It's like she senses and she knows and one of the things that they tell you with this disease is, if you have a pet, stroke your pet pet on your pet for half an hour or more a day because that is therapeutic.
Speaker 2:That helps relieve your stress. It's very calming for you and for them. She's just my constant companion. She's a 70-pound lap dog. I like to say Up and down on the furniture, that doesn't bother me at all. I just want my girl near me. Living alone for so long it was comforting to have her here with me. She's not the perfect dog, but she's perfect for me. I think that's really all that matters.
Speaker 1:I love it. Shelby sounds like the whole vibe for the whole neighborhood. She sounds like a therapy dog for the entire neighborhood. I love that. I love that for you, I love that for your neighbors, I love that for your care team.
Speaker 2:I love that for Shelby. Let me one last story about the dogs. In the fall my neighbors to the north of me have two dogs, summer and Tilly, and in the fall I'll be watching football. I'll have my back door open to where Shelby can go in and out. Neighbors will go to a football game and I'll be watching the dogs. And all of a sudden the dogs just come walking in, sit on my feet and we're watching football and at one point in time I thought I was going to end up selling my house. I said you're going to have to tell the new neighbors that move in that if they leave their door open they may have another morning guest come in. But eventually they'll learn to love these girls. Yeah, they absolutely love. When I say let's go see Summer or Tilly Bell, she gets her tail wagging. We go over and they have fun. That's your playtime.
Speaker 1:If you could go back and talk to young Steve before all of life happened and Steve got his diagnosis, and give young Steve some advice about the future. What advice would you give young you about the future?
Speaker 2:Pay more attention to my education. I was not the best student when I was going to elementary and high school. A lot of that had to do with some of the trauma that I went through as a kid, you know. I ended up living in a couple of different households when I was younger, so I had some abandonment issues and I was never the best student. But once I got my wheels underneath me, I hit college.
Speaker 2:I put myself through college. It was the first to graduate in my family. My grades turned around and the last three years of my college career I don't think I ended up with anything less than an A or a B. So yeah, I finally figured that out. I wish I would have figured it out sooner because I probably would have gone deeper into medicine At. Yeah, I finally figured that out, and I wish I would have figured it out sooner because I probably would have gone deeper into medicine. At one time I thought I might have wanted to be a PA or a physician, just because I love that aspect of the human body and treating people.
Speaker 3:Okay, this one's a fun one. What's your ultimate pizza topping combo? That's it.
Speaker 2:There used to be a pizza place called Ken's here in Oklahoma City or in Oklahoma, and they have spicy sauce. You can't put any topping on that. That is not good. I mean, you know, a spicy pizza sauce is awesome. I was talking to my mom about this the other day because she loves pizza. In fact, when I was in the hospital there was a sign that said please bring a pizza to my room, but the sad thing was my mouth was wired shut so I couldn't have eaten it. You know I love pepperoni, I love jalapenos and I love mushrooms I mean, you can throw that on there and, of course, a good dose of cheese. You know you've got to have the stringy cheese when you pull that, but yeah, that's probably my favorite. Now I have had deep dishes in Chicago at Udo's, which is good, but I'm more of a thin crust kind of guy. But yeah, gotta get my pit bloody.
Speaker 3:Thin and crunchy all the way.
Speaker 1:Yeah, I'm from Chicago, so the deep dish, the Chicago style pizza, I get it. It's a lot of cheese, it is a lot of cheese right in your mouth, right up front, right away in reverse pizza. But just watching you describe the pizza, like you were glowing, I could tell your love for pizza and I was getting excited. I was like he talks about food, like I talk about food and you got happy. I love pizza. I also love pizza.
Speaker 1:Thanks to the it's a real thing I will be getting pizza today. I will be having pizza today, so humor me If you could sit down with any historical figure or inspiring person for coffee and you only get 10 minutes. Who are you sitting down with? What are you talking about and why I?
Speaker 2:was asked this question in sociology in college and I go back to the same guy, abraham Lincoln, I think, having a coffee with that guy. I mean he was, he grew up in the middle of nowhere, he studied by candlelight, he became a lawyer in the backwoods of Illinois and I would just want to know what motivated him to do what he did and, to you know, want to be president, because the guy made such an impact for our country. I would want to talk to him present because the guy made such an impact for our country. I had one talk to him. He just was such a historic figure for our country, mainly just to see how tall he really was.
Speaker 1:They said he was, was he seven feet?
Speaker 2:He was very tall. I know that. I've seen pictures, historical pictures, where he's towering over everybody and then he's still on the stone pipe half, which even elevated him that much more. So, yeah, and I'm 5' everybody. And then he's still by path, which even elevated him that much more.
Speaker 3:So, yeah, and I'm five, seven, so I know I'd be looking at that I'm five, two on a good day, so I can only imagine he just has to look like a tower of a man yeah yeah, yeah, that's clear.
Speaker 1:That's two feet easy. Taller than me, because I'm well foot, it's a foot, a full, full foot. But I'm going to say two feet because I won't complete. They won't give me six feet, they will only give me five, 11 and three quarters. And so I will take the five, 11 and three quarters.
Speaker 2:I could probably get another eight to an inch five, seven and a half feet with my socks.
Speaker 3:Steve, it was a pleasure to have you on. Thank you. It was a pleasure to have you on Thank you.
Speaker 2:It was a pleasure to be here and talk to you. I don't get out of the house much, so when I get the opportunities to do these interviews, it really elevates me. My mind has been off my foot the entire time. I still feel, it's still hurting, but yeah, these distractions are the small joys that I get in life, and this will impact me for the rest of the month, if not further down the line.
Speaker 3:Thank you, thank you so much. All right, spoonies, until next time. Don't forget your spoon.
