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Video of Cheryl & Ray’s Discussion:
Summary:
Trigger warnings: orthorexia (obsession with eating “healthy foods”), / eating disorders; fear of foods
In Episode 122, Ray shares the shock and emotional turmoil he experienced upon receiving his diagnoses of rheumatoid arthritis (RA), ankylosing spondylitis (AS), and osteoarthritis (OA). He describes the initial denial he felt and the process of coming to terms with his diagnoses, acknowledging the emotional toll it took on him and his family. He also reflects on what it’s like to be a man with rheumatoid arthritis.
Cheryl and Ray discuss coping strategies, the role of social media, and finding a supportive community online. He also explains the importance of advocating for oneself and seeking out reliable information and resources, taking a proactive approach to managing his conditions, and finding the right balance between pushing through pain and listening to his body’s needs.
Episode at a glance:
- Diagnosis Story: Ray describes his diagnoses and experience living with rheumatoid arthritis (RA), ankylosing spondylitis (AS), and osteoarthritis (OA).
- Navigating Multiple Conditions: Ray explains the complexities of living with multiple chronic illnesses, including challenges related to symptom management, accessing healthcare, and adjusting to lifestyle changes.
- Social Support and Connection: Cheryl and Ray discuss the significance of social support networks, in providing connection and understanding for individuals living with rheumatic diseases. Ray reflects on what it’s been like for him to be a man with rheumatoid arthritis, which tends to affect more women than men, and discusses how difficult it’s been at times to feel his emotions.
- Self-Advocacy and Empowerment: Ray emphasizes the importance of self-advocacy and seeking out reliable information and resources to empower oneself in managing chronic illnesses
- Acceptance and Resilience: Ray shares insights into his journey from feelings of denial to acceptance and living a fulfilling life despite health challenges.
Medical disclaimer:
All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Episode Sponsors
Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!
Speaker Bios:
Ray Bouchard
Hey, my name is Ray, I am 68 and live in Florida. I have ankylosing spondylitis, rheumatoid arthritis and osteoarthritis. I am not a writer but people sharing in this community have helped me and it expands everyone’s perspectives. I was diagnosed with seronegative rheumatoid arthritis in 2016. I was 62 years old. Over the next three years I tried/failed 4 biologics and 3 disease modifiers, I lost my job/career, I lost my identity, and my RA was still unchecked. I am an advocate for movement, good food and arthritis awareness .
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- More information about orthorexia
- Speaker links
- Cheryl’s Arthritis Life Pages:
- Arthritis Life website
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl: 00:00
I’m so excited today to have Ray Bouchard on The Arthritis Life podcast. We always, you know, I’m trying to get representation of different voices and have had a lot of women on the podcast, and I’ve had a handful of men, but I’m excited to have you today to represent, you know, all of your unique experiences. To get started, can you just let the audience know where do you live? And what is your relationship to arthritis?
Ray: 00:27
So, hi, everybody. So, I live in Venice, Florida. I moved to Venice 20 years ago, and I have ankylosing spondylitis. I have rheumatoid arthritis. And I have osteoarthritis. And those are my relationships, I guess, to arthritis.
Cheryl: 00:54
Yeah, yeah. And we’re gonna talk more about, yeah, that it’s, you could interpret that question many different ways. Relationship, someone once said, “It’s complicated. I have a complicated relationship to my arthritis.” But yeah, thank you for sharing it. I’m sorry that you have, you know, they say that arthritis and autoimmune diseases don’t like to travel alone. So, if you have one, you’re more likely to have multiple. So, unfortunately, you are an example of that.
But I would love to know a little bit about your diagnosis story, you know, which one came first? And how did you, you know, how did you figure out what it was? Because that could be a long journey.
Ray: 01:40
I think, so the first thing I remember, I think I was 34 years old. And I had really bad back pain, hip pain, things like that. And I remember a doctor saying, and I didn’t remember the word until years later, because I didn’t pay attention to it. He said that I had ankylosing spondylitis and he said I would be a crippled old man. And I just went on my way. And so, that was — I went a long time untreated until I was in my, I think, 65. I seriously injured my knee. And they had to replace the knee. And it was a sporting injury. So, they replaced the knee and six months after that, my autoimmune system just went nuts. And it was the first time that I had an experience with rheumatoid arthritis. So, I’m in my seventh year now.
Cheryl: 02:50
So, when you were 34, was that at the rheumatologist that diagnosed you with ankylosing spondylitis? Or was it just your primary care?
Ray: 02:59
It was, no, it was — it was my primary care. And then, later after that, it was an orthopedic doctor that had said that was the ankylosing spondylitis. He was actually did some surgeries on my lumbar area. And yeah, after looking at things and seeing how things were looking, he said it probably looked like I had ankylosing spondylitis. And I didn’t do anything. It’s not his fault. I just, I was 34.
Cheryl: 03:33
Yeah. And so, did it — I’m so I’m fascinated by this in the sense that I’m curious if you had symptoms, like were you symptomatic for those 30 more years until you injured your knee? Was your back — were you just living with back pain?
Ray: 03:49
Yeah, I lived with horrible back pain. Yeah, and I worked very hard. Yep, opioids, steroids. Lots of stuff to keep going.
Cheryl: 04:03
Wow. So, and can you tell the audience what you did for work, or do for work?
Ray: 04:08
So, I was a first responder. The beginning part of my career, I started out in the fire service. And about 17 years in, I left and went to the American Red Cross. And I worked with the American Red Cross for 11 years. And I worked in the disaster relief department and travelled all over the country to major disasters and things like that. After I left the Red Cross, I went to work as a contractor for Allstate, and I finished my career, you know, in hurricanes, that’s where I worked. Hurricanes, one after another after another.
Cheryl: 04:49
I guess you’re in the right place in Florida for that work.
Ray: 04:52
That’s how I wound up here I think, yeah.
Cheryl: 04:55
Wow. Oh, my gosh, and I’m just, I’m just imagining how physical your job, you know, was or jobs were, and how much pain you were living through. And then, so what — how did you injure yourself when you were 65? Now I’m curious. Sorry.
Ray: 05:10
So, it’s 65. I was training for a Spartan Race, which is a 12-mile — it’s crazy for a 65-year-old person to do that. But I did it. And I came over an eight-foot wall, and I didn’t lower myself. I just went over the wall. And when I hit the ground, I just went the other way.
Cheryl: 05:31
Gosh, so a Spartan Race is kind of like an obstacle course, is that right? Kind of like those army troops obstacle course where you go climb up the rope, and yeah. Yeah, I’m always nervous when I watch those on TV, or like American Ninja Warrior. I know that’s different. But I’m always like, oh, don’t get hurt. And then, so after your knee replacement at 65 then you developed auto — more like a, well, I mean, you already had a diagnosis of AS, which is like autoinflammatory. And then, and then after this, the surgery, you developed more like rheumatoid arthritis along with, yeah.
Ray: 06:10
Yeah, I had rheumatoid arthritis. And I didn’t believe that diagnosis. I went all the way to the Cleveland Clinic and had them do all this stuff. And it’s seronegative, you know, so it’s always hard for me to kind of get my arms around that nothing ever says I have RA except doctors. I mean, I trust them.
Cheryl: 06:33
Yeah, yeah. They call it like a diagnosis of exclusion. Because there’s no one definitive test. It’s like diabetes, where like, if your blood sugar levels are above, your fasting blood sugar is above a certain amount you have it? With, yeah, with rheumatoid arthritis, it’s they also call it a clinical diagnosis where they look at the pattern of your pain, you know, was it in your distal joints like your fingers and toes? Yeah, that’s more likely to be RA than straight up, you know, ankylosing spondylitis, and stuff like that. But yeah, it’s very common to be confused about your diagnosis especially, yeah, if you don’t have that positive rheumatoid factor, because it feels like that rheumatoid factor is like, you know, it just makes sense that that would be because it has the word ‘rheumatoid’ in it, but people can actually have a positive rheumatoid factor and not have RA. So, it’s very, anyway, welcome to autoimmunity, just confusing and overwhelming.
But so, what are the — you mentioned that prior to the knee replacement, you were doing opioids and steroids for your back pain. What are some of the treatments — what’s been working well with your treatment plan recently?
Ray: 07:54
So, my treatment plan, it really hasn’t been working well. You know, I’ve gone through a lot of recently was on a biosimilar, Avsola, and I was on that for a year, nine months. And then, they’ve switched me off to Remicade, which absolutely is a biosimilar. So, and I never got, and I just never got what I felt was good enough bang for the buck. I don’t want to put it that way. But there were things that still weren’t right. And, you know, I was on the methotrexate, and I stayed, you know, faithfully on my methotrexate and did that. And still, it just felt that the treatments were, like, not just not working. So.
Cheryl: 08:57
You’re still kind of in that trial and error, maybe we could say, figuring out what’s going to work.
Ray: 09:03
I think I want to switch to Skyrizi, which is a different, it’s a different area in the immune system. It’s an inhibitor, it’s an IL-23. I should know these things. But yeah.
Cheryl: 09:27
There’s so many acronyms, so yeah, and I know that, you know, yeah, Remicade is a TNF inhibitor like a tumor necrosis factor inhibitor. And it is true that when you don’t respond well to one class of medicine, you know, then you try a different one. So, that is kind of a progression that’s typical to goes through. If you’re not fortunate enough for the first one to work — I didn’t realize how lucky I was when my first medicine I tried worked really well for me for six years. I was, I thought that’s what everyone, I thought that’s what happened to everyone, you know, but unfortunately, it’s not that simple sometimes. So, it’s just you’ve been having to manage a lot along with osteoarthritis. And where is your osteoarthritis currently?
Ray: 10:20
So, it’s, I’ve had my left knees been replaced in the reason it went out was osteoarthritis. I replaced that. My left hip has been replaced. My right hip will be replaced after my run next week. And it’s in my knee. I know it’s in my knee. It’s in my wrists. Places that I used a lot, it’s, yeah.
Cheryl: 10:50
Yeah. But you’re still so active, which is so, you know, it’s an interesting like, I’m guessing to some people listening. It’s like, oh, wow, you can still be active, even with arthritis in so many joints. Are you in a lot — do you find that exercise helps your arthritis?
Ray: 11:12
It helps. It also can hurt. You have to be careful. It’s, and it’s not the exercise. It’s the person that making the person do the exercise that shouldn’t be doing it. So, I know things I shouldn’t do, yeah, but I do them.
Cheryl: 11:32
Welcome to hit being a human. That’s okay. We are all like that. So, don’t beat yourself up too much, you know?
Ray: 11:42
You know, it’s a battle. It’s a, it’s just I want to hold on, I don’t want to lose things. And arthritis take things away. And on top of that, I have age coming in there too. So, there’s two things that are really like pulling on my abilities. And it’s not like I had a car crash, you know, and my back is broken, I’m a paraplegic. It’s like, it’s a little, like, a steady decline.
Cheryl: 12:19
Yeah, yeah.
Ray: 12:20
Not like, woah, it’s gone.
Cheryl: 12:21
I know what you mean. It reminds me of that old story of like, you put the frog in boiling water and it jumps out. But if you put the frog in warm water, and then you slowly, and I know that’s not actually what that story is supposed to mean. But it’s like you’re, or actually the better analogy would be like the death by a thousand cuts, you know, where you’re just having all these little losses that you’re grieving.
Ray: 12:48
Yeah, it’s never, yeah, it’s just one after another. I have to have a piece of skin cancer removed. It’s not a big deal. I can’t go in the water for two weeks. I live in the water. I can’t do that for two weeks now.
Cheryl: 13:07
Yeah. Yeah, it’s so much to manage. It’s that’s why people say chronic illness is like a full-time job, you know.
Ray: 13:13
It is. Good thing I’m retired.
Cheryl: 13:18
Yeah. Seriously, yeah. And, you know, you touched a little bit on, we touched a little bit on the, you know, grieving the things, the losses, the losses of being maybe in your case, having been so active even despite your AS diagnosis being so active, even, you know, from a younger age. You know, I’m curious about, you know, in general what has helped you cope with the losses, with the ups and downs? You know, what — yeah, there’s, I know there’s no secret to coping, but it’s always nice to hear what’s helped other people.
Ray: 13:59
I can’t say I cope well. I hide it really well. I don’t cope well at all. But I cope by I get up every day, I show up. I do the best I can every day. And that is, I guess, what helps me get through. I just know that I’m doing the best I can. And if it’s on a couch, that’s okay. I know. That’s the best I can do today.
Cheryl: 14:32
I mean, I love that. What I hear in that is like I have some mantras that I repeat to myself, like one of them is like ‘We can do hard things’. Because I’m very social. So, I like to feel like I’m part of something bigger. Not just ‘I can do hard things’, but we as humans. And, you know, I’m doing the best I can is a great mantra, you know. But you’re, but you feel like you’re not coping well, it sounds. I want to validate that. Yeah.
Ray: 14:59
Correct. Correct. My mental health isn’t well.
Cheryl: 15:04
Is not what, sorry?
Ray: 15:05
It’s not well, no.
Cheryl: 15:08
I mean, what — yeah, it’s hard to know what is, like, is any human in a perfect state of mental wellness? I don’t know, you know?
Ray: 15:17
Yeah, it’s just a, it’s a piece to cope with. It was, I don’t think it’s different for a man or a woman, the loss, okay. But my loss, I was part of a team, we travelled the country. We were together. Ate, slept, lived together. And then, when I got sick, I just moved on. And that was a real hard thing. And I would have done the same, I’d done the same thing. Many people have died on my team, people have gotten sick on the team. And that’s what happens. I understand it. But that was really hard to deal with. And then, you know, I just kind of withdrew. And at the same time, COVID, COVID hit. Nobody was coping well with anything. And that was true. I haven’t come out yet.
Cheryl: 16:21
And do you have a support system?
Ray: 16:24
I have my wife. She’s great. You know, and I had my daughter, but I don’t have a medical support system for mental health. There’s just — and I’m not being, I’m using a very broad brush here. I don’t like to do that. It’s hard for all men to find mental health. We’re just not — everybody thinks we’re angry. And we’re just not. We’re in a lot of pain, you know, but it’s just hard. I can’t get a mental health appointment. It was three and a half hours on the phone one day. So, it’s hard, I guess.
Cheryl: 17:02
No. And I, first, I just want to appreciate, like your honesty, because, you know, this is hard to talk about this kind of stuff. And yeah, I mean, I think it’s there’s a big generation difference I’ve observed in, you know, the current generation, the young people now, like even let’s say, my son who’s nine years old, we talk about mental health from a young age. They talk about it in school, they talk about bullying, they talk about, you know, mindfulness, taking a deep breath. But and, you know, I think when you grew up and to some degree when I grew up, I’m 42, you know, it wasn’t as big of a focus. It wasn’t, there was more stigma against it, talking about mental health.
I always, I thought it was — for a long time, I didn’t go to therapy, because I thought it would be a weakness. You know, I’m like, no, I’m mentally strong. I don’t need it. Like denial, you know. And I thought I didn’t — I had a weird, anyway, I had a weird thing where I was like, well, my I have all these privileges in my life. So, I shouldn’t have to go to therapy, because I’m like, I don’t deserve it. Because my life isn’t that bad. You know, so that was a weird thing. But yeah, but back to your story. It sounds like you are interested in, like, trying therapy and getting mental health support, but it’s been really, really hard to find it.
Ray: 18:21
Yeah, it’s been, yeah. The thing now, and I joke that I joke, it’s like the California psychic hotline now. That seems to be where mental health is going, you know, call this 800 number.
Cheryl: 18:39
Oh, talk to BetterHelp.
Ray: 18:43
Yeah, we just call someone on the phone.
Cheryl: 18:47
Yeah. No, I mean, yeah, I think they’re trying to actually deliver good therapy. I don’t, not talking about BetterHelp in general, but in general, but you know, telehealth, they’re trying to make it more accessible, trying to make therapy accessible to people. Which hopefully overall would be a good thing but yeah, it’s definitely —
Ray: 19:06
Maybe psychic hotlines was some good.
Cheryl: 19:10
I know we grew up, yeah, I mean, I’m not, I’m obviously a different generation than you. But I remember growing up with like, you know, everything was like, yeah, 1-800, calling any sort of 1-800 number was not like a good thing. So, yeah, I’m like, oh, my gosh, how do we get on this tangent. But, you know, I think it’s, on the one hand it’s like you have gratitude for it sounds like, you know, that you have your wife and you have your daughter and but you’re looking for maybe some more, you know, there’s, it’s your, your family members are there for you, but they’re not a substitute for, like, a professional that has been trained in mental health. And that is only there, they’re there for you as an objective observer, not as like someone you have a lifelong complicated relationship with, you know? I hope there’s some good therapists in Florida that you’re able to hook up with and you know, I forgot, I was gonna — my brain fog just took over. I was gonna ask another follow up question. But oh, you’re saying hiding it. Like do you feel like you have a pressure to like hide your pain from your family and others?
Ray: 20:32
Yes. Absolutely. That’s just, you know, I tell people I’ve accepted the fact that I’m a 1954 model, and I’ve been upgraded. This is it. This is where it’s gonna go. And yeah, I just don’t.
Cheryl: 20:56
Your 1954 model, I think that’s hilarious. Like talk about yourself like a car.
Ray: 21:02
It’s, I just, there were things that just, they’re just there. They happened, were put in me so young when I was so young that I just, you know. Everything we did, I look back at the time, was, I always joke, I mean, we were — I was born basically to fight World War Three. All the toys we were given were guns and knives. And when I was a little kid, yeah. So, it’s like, the things, the message that were put into us as little kids about as a man, you don’t cry. You don’t cry, period, you know. You don’t even go around the corner and cry. It’s a hard thing. It’s a hard — I go, I cry. I am biggest blubbering being. I stand in front of people and cry and take deep breaths. And yeah, I don’t do well with that part at all.
Cheryl: 22:02
Well, that’s, it sounds like you’ve given yourself permission to feel some of your feelings at least.
Ray: 22:09
I don’t like that one at all.
Cheryl: 22:11
Yeah. So, you don’t, you don’t like to cry. But you, but you do. Is that what you’re saying?
Ray: 22:18
Yeah, it happens. Yeah, it’s very frustrating. It’s got nothing to do with RA.
Cheryl: 22:26
Well, I mean, yeah, yeah. Everything’s, everything intersects though, right? So, like those messages you are given as a young child that boys don’t cry, gotta toughen up, you know, those become internalized. And then, when you’re living with chronic pain from RA, and AS, and OA, osteoarthritis, it’s like you, you immediately have this reflex when you’re feeling pain, and you want to cry that, oh, I can’t do that. I shouldn’t do that. I’m ashamed of that, right.
Ray: 22:57
Yeah. Just, yeah.
Cheryl: 22:59
And that, it takes so much work to undo that kind of, and then they call it toxic masculinity. In some ways it is, well, I guess that’s a broader, that’s a broader statement. But it’s like the toxic messages around what you as a man should be able to express and feel is so, it’s unhelpful to everyone. You know, sorry. My dog just came in the room. I was like, who’s that? And it’s, you have to undo, it’s like they talk about undoing your internalized ableism or challenging your internalized ableism, challenge our internalized, you know, what would you call it? Yeah, and challenge your internalized toxic masculinity and say, no, it’s okay. I’m a human being. Like humans, through all of human history and all of human cultures, you know, humans cry.
Like it’s not a failure to cry, you know, it’s not a failure to feel emotions. It’s something that everyone throughout history has done if they’ve, you know, it’s the first thing we do when we come out of the womb is cry. Now, I feel kind of like I’m like crying influencer, like, everyone cry. Oh, my gosh. And one thing that another thing that we kind of talked about before we starting recording is on the mental health, that both you and I have struggled with anxiety. And in your case, you know, I know you’ve had some struggles, and this is just whatever you feel compelled to share about. There’s no pressure, you know, but with, you know, OCD and some struggles around food, is there anything you want to share with the audience about that?
Ray: 24:49
Yes, I would love to share that. And it was, I basically I was away from home and I followed some, I followed a really good group of people on Instagram and I listened to, I looked at the the arthritis diets, and I looked at everything. And they were very great, great messages. And my head, you know, took those messages and I started to make some very small changes in my diet. And the very first one I remember was, I started drinking black coffee. My goal was to get rid of dairy. So, I started drinking black coffee. And I was working in California at the time, and I was away from home. I was alone a lot. And so, my head started taking over. And in the process, in a course of three months, I had taken all dairy, all gluten, all meat, fish, nightshades out of my diet. My pretty much mostly ate a lot of black beans and black coffee.
Cheryl: 26:14
Oh, wow.
Ray: 26:15
I’m embarrassed, but didn’t think anything was wrong. I made big pots of vegetarian chili. Yeah, and, you know, just didn’t think anything was wrong with it at all. And a funny thing was as I was going through the material in the Rheum to THRIVE. And I’d be on the spot to tell you what the word is right now. I would see it in front of me.
Cheryl: 26:50
Orthorexia?
Ray: 26:52
Orthorexia. Yes. And the one thing that stuck out to me was fear of your food hurting you. And it’s like, that’s what was going on. I had gotten to the point where I needed to eat the best bean. I had to have the best vegetable. I had to have — so, I excluded so much stuff from my diet. I was down to 176 pounds on a six-foot, four-inch person. Right now, I’m at 204 pounds. Yeah, so it got really out of hand. And nobody noticed it because I was gone for so long. I didn’t travel because COVID was coming out. So, I just stayed out on the West Coast and worked. And even though I had RA and had all that stuff going on. So, that’s what happened with that. So, happy to say, you know, I don’t have, I don’t eat red meat. But I have chicken in my diet now, I have fish in my diet now. I actually had a few support group the other day and I didn’t die. Yeah, so, you know, looking at things and my diet is doing much better.
Cheryl: 28:25
Yeah. And I mean, I just, again, I’m glad you’re sharing to bring awareness. I’m sorry you went through this, but it is really, it’s a really subtle thing for people to acknowledge is a problem was the thing — that sentence was meant to be orthorexia is something that on the surface level looks like a healthy behavior, right? You’re saying, “Oh, why is it bad to eat healthy?” It’s not bad to eat healthy. But the problem that’s not healthy, that is mentally unhealthy about it is that when you get to the point where you’re so obsessed with only eating perfect, only eating clean and fearful of food, it interferes with your ability to function in daily life. And it causes us immense stress, which if you’re ‘eating clean’, or quote unquote, or eating, you know, a certain diet in order to manage your inflammation, your inflammatory arthritis, and you are so stressed about every bite of food that you take, and stress is inflammatory, you’re actually shooting yourself in the foot because you’re just substituting one form of stress for another, you know. You’re saying, “Okay, well, yeah, I’m, I’m getting rid of the inflammation from food, but I’m replacing that inflammation with inflammation from stress, because now I’m so stressed about eating,” you know. And it’s a cycle a lot of people get into and they don’t recognize because it doesn’t look like from the outside like you’re still eating. So, it’s not like you’re not eating. It’s not like anorexia. So.
Ray: 30:01
Big bowls, I mean, yeah.
Cheryl: 30:05
What helped you, what helped you get out of that cycle?
Ray: 30:11
First, realizing it. That was the very first thing. Just understanding that oh, my God, what’s going on here? And then, it was just, I didn’t talk to a lot of people about. I actually wrote a piece about it. And I posted it, I don’t write a lot, but I posted it. And I figured if I just outed myself that I have this thing that other people are going to see it now. And at the same time, I just told my wife, “Listen, from now on, I have some kind of animal protein with my food.” I don’t care if it’s a little piece of chicken, a little piece of fish, you know, whatever. But it’s got to be animal protein. But no dairy. I still don’t do dairy. I thought there was great benefits to no dairy.
Cheryl: 31:02
Yeah, yeah. And that’s a process a lot of people, you know, with rheumatoid arthritis and other forms of inflammatory arthritis, it’s a very helpful process to go through determining what are your body’s triggers, right? Triggers for pain or fatigue, overall inflammation. Is it dairy? Is it gluten? You know, is it nightshades, some people have a difficulty with nightshades. Some people, I actually have difficulty with legumes like beans. So, that would be hard for me to do a bean-based diet. Many people do great with them, you know. So, it’s that experimentation on your own body can be very helpful. It’s just it’s when you take it too far to where you’re constantly stressed about food or fearful of food, it’s where, that’s where it’s, you know, not as helpful. And one thing I heard a lot, I wish I remember where I read this, but that eating disorders aren’t really about food, they’re about control. And like, I don’t know, to the degree to which, you know, a psychiatrist may agree or disagree with that.
But the part that resonated with me was when you have a chronic illness, there’s so much out of your control. And one of the things that you do multiple times a day that’s in your control is choose what to put in your body, right? Choose the foods to consume. So, it’s so, it’s a very natural, I would say or to want to control your diet. So, again, it’s an impulse, it’s like a — I don’t know a good analogy, but the impulse is correct to say, I’m gonna try to ‘eat healthier’, quote unquote, you know. That’s not a bad thing. It’s just, it’s taken too far, you know? Yeah, I guess a good analogy would be like the OCD of washing your hands, which OCD is a lot more than that. But, you know, washing your hands is not a bad thing. Washing your hands once is a reasonable; maybe twice, okay. 16 times, now it’s interfering with your life now. It’s, you know, you’re creating stress, and you’re not engaging fully in life.
So, yeah. I mean, and again, it’s, it’s very, very hard for people to self-treat any disorder. So, I’m, you know, think that you get some, I was gonna say, gold star, I’m always giving people gold stars, because that’s when I grew up in the 80s where you get a gold star for doing everything. You know, I hope that you feel proud that you were able to recognize it. And you know, it’s hard to change your behavior.
Ray: 33:23
I don’t know, I don’t think I would have recognized it if I hadn’t have — I probably would have recognized something was wrong. I probably knew something was wrong. But when I was doing, just coming across that, and that caused me to go, and the orthorexia caused me to go, let me go check what that is. And I looked at some other stuff. And I’m like, oh, my God, you know? So, it was, yeah, that was a big part of it. It was really slow. I didn’t realize what had happened.
Cheryl: 33:53
Yeah. And I think it —
Ray: 33:55
COVID did weird stuff to all of us, I think.
Cheryl: 33:59
Yes, yes. It’s, that is so true. Yeah, it was not just that you’re not in control of your body because you have an autoimmune disease. And then, now you want to seek control through food. It’s also that your, like, your environment now suddenly, is really out of your control, because this COVID could be floating around anywhere. And we didn’t really know how it was transmitted. And so, all the more reason people sought to control what they could, you know? Yeah, I’m glad. I mean, I actually had never heard about orthorexia until I was putting together the materials for the Rheum to THRIVE course and I was, I thought it really resonated in making points to talk about it in the course with a trigger warning, you know, of course, about eating disorders. But because there, especially on social media, there’s a lot of content, a lot of silos or rabbit holes you can go down or get into where everyone is pressuring each other to, you know, eat a certain way and feeling guilty if you’re not doing that, you know what I mean? Cause it sounds like you heard about these diets through Instagram, is that right?
Ray: 35:16
Um, it wasn’t — I followed really good people. Like, I mean, on Creaky Kitchen.
Cheryl: 35:23
Oh, yeah, those are valid.
Ray: 35:25
Yeah, like, you know, I followed things like that. And it was really good advice. But it was what my head did to the advice. Really good advice. I still follow, you know, the people that I followed. It was not, it was me. Yeah, it was just where my head went with it. And it’s, I think part of it is I’m an athlete. I’m goal driven. I am numbers driven. I love to see results. I love to — and I think that contributed to it. I just think it was a perfect, perfect storm of things that came together.
Cheryl: 36:06
I mean, yeah, I once had a doctor that told me, you know, my athletes are sometimes my hardest patients, because he knew that I was a soccer player in college. And I said, “Oh, why is that?” He’s like, because they’ve had so much practice overriding their body’s signals of pain, right? To be, to excel in athletics, most people have to push through their pain. And that’s not always what you want to do if you have a chronic, you know, condition. Although to make life more complicated, you also don’t want to overly listen to your pain, if your pain is from like fibromyalgia or like central sensitization where it’s a misfiring of your brain, or your pain signals that your tissues are actually not damaged, but your brain is interpreting pain. So, it’s just complicated.
Ray: 37:02
You know, just keep going.
Cheryl: 37:05
Yeah, I know. Yeah.
Yeah. I mean, and that’s, I want to ask you a couple more things. One is, you know, I think I met you on Instagram, right? The @Bionic_RA. When and how did you kind of start your account?
Ray: 37:25
So, when I first got arthritis, when I first was diagnosed with RA, I started looking around Instagram and Twitter. And I had two accounts. The Twitter one got toxic for me. But it was just showing me me. It was this is what you want to look at, this is what you’re looking at. So, we’re gonna give you more. And then, when I came into Instagram, I was very, I don’t look at things like, I just focus on the arthritis and moving and things like that. So, I’ve been, my Instagram account now is six-and-a-half years, I think.
Cheryl: 38:10
Wow. Okay. Yeah. And I’m sorry, I didn’t prepare you for this question. But I thought, oh, this is a good thing to delve into. Because, you know, it is for so many people that feel isolated with their condition, social media can be a little bit of a lifeline. Like, did you find that, like, how has it been helpful for you to connect to other RA warriors, as they’re called, or AS warriors?
Ray: 38:38
So, you know, there’s the general, the general groups, you know, that you send messages to, or you post out to, or read their posts. But I also get through the DMs with people that I’ve known for six years, I have people that I ran with, who were pregnant, and their kids are in school now. And they have AS. Yeah. So, it’s things like that. So, I keep in touch with these people through DMs as well. I have a very special group of people and it has replaced and rebuilt a social life for me that didn’t exist, that, you know, I burned to the ground after COVID. And so, I think my Instagram account, I know there’s Tik Tok, I know there’s all these other ones, but I get anxious sometimes if I can’t post or something like that. So, I don’t want to multiply and times three or anything like that. I got rid of my Instagram — oh, my Twitter account a long time ago. And it was a good thing for me.
Cheryl: 39:50
A good choice. Yeah.
Ray: 39:51
It was a really good thing for me.
Cheryl: 39:53
It’s now called X. It’s gotten, yeah, I stay on it because a lot of doctors are on it that I’ve connected to at like conferences and other health professionals. But, yeah, I think you’re really wise to keep it to one. Again, do as I say, not as I do.
Ray: 40:11
Yeah, I get the business part. Yeah.
Cheryl: 40:13
Yeah. But I mean, I think that’s a beautiful testament to you know, the power of, of social media. And for those who aren’t familiar, DMs stands for direct message. So, it’s basically a one-on-one correspondence with someone like an email through the social media platform, or it can be a little group, you know, more than just one-on-one. You can have a little group private message group. But yeah.
Ray: 40:38
It’s been a big, it’s just been a really big thing for me, you know, it really has. I keep my circle very small, a tight circle. I share openly on my platform. I don’t care. But, you know, the people that I keep, I keep close with, I might share a little deeper stuff.
Cheryl: 41:04
Yeah, yeah. And I love, I love your, I mean, I’m living on the total opposite side of the country from you. So, I’m in Washington state, you’re in Florida; I’m Northwest, you’re Southeast. And I just love — I know this is not the point, but I love the pictures that you share of you know, these beautiful, you know, trees and, you know, a crocodile or alligator. All this stuff is so exotic to me.
Ray: 41:26
Yeah, alligators, like, I love, it’s just part — part of the reason we moved back down to Florida in the 80s was just to be around all this. And I love kayaking. I love being out. I love being around alligators. Love swimming with manatees. Yeah, I just, it’s so special to be here.
Cheryl: 41:52
So, do you have to adapt? Like, or how do you adapt if you do any of your hobbies? Like do you have hand pain while kayaking and stuff like that?
Ray: 42:03
Yes, I do. I pretty much I wear a glove with a wrap. It’s a weightlifting glove that I wear. So, it increases the size of the grip so I’m not gripping as tight. And it keeps my wrists, yeah, so I use those.
Cheryl: 42:25
That’s a real — you’ve got like an honorary occupational therapy degree because that’s probably something that an OT would tell you, but you didn’t even have to go to an appointment. So, I have, I just bought some of those weightlifting gloves actually myself.
Ray: 42:38
They’re great for the wrists. I mean, you know, my wrists are really bad.
Cheryl: 42:44
Wrist pain is hard. You don’t realize how much you use your wrists, right, until you hurt them.
Ray: 42:51
You know, it’s when a six-foot, four-inch, 205-pound guy can’t open a pickle jar… [Chuckles]
Cheryl: 43:00
Yeah, yeah.
Ray: 43:01
Yeah, that’s, yeah, so I’m very careful with my hands. I’ve had seven surgeries since I’ve had RA on my hands. In the last six years, I’ve had seven surgeries.
Cheryl: 43:15
Oh, my gosh. On hand and wrist?
Ray: 43:17
Just hands, to free up tendons.
Cheryl: 43:20
Wow. Wow.
Ray: 43:23
It went after the tendons in my hands. So, they had to open up the channels that the nerves fly through. So, it wasn’t down in the carpal area.
Cheryl: 43:37
It was intrinsic area, like the muscles that start and end within the hand versus the ones that originate further up the arm and go across the wrist. Yeah, the hand is so complex. I mean, as you know. From experience, I studied it in school to be an occupational therapist, but there’s no substitute for having to experience it yourself.
Ray: 44:03
No. Just do all these parts, you know?
Cheryl: 44:06
Yeah, yeah, you got the replacement part, you have the replacement models. I love that. I love that analogy. I was just yesterday I recorded an episode that is gonna come out right before this one with a nurse practitioner who she used a car analogy as well but she was using it for like the different variables that can help you, you know, manage your condition. So, she’s like, it’s like you’re the car and there’s these four wheels. There’s like medication, and there’s like three other wheels of like lifestyle and mental health, you know, finding balance in your life and I thought that was kind of interesting. But anyway, seems to be cars are like the theme of the week this week. But yeah, they were, it works. Well, we’re in America, we are a car-centric culture.
And I wanted to know if there was anything else you wanted to share? You mentioned you know, you did the Rheum to THRIVE self-paced course, which I often talk about the support group, and I always, I want to make sure to make it clear that there’s this prerecorded lectures that I deliver in the self-paced course, which you can do by itself. Or you can do it alongside the support group. But it was, you mentioned that, you know, learning about the orthorexia was helpful and the nutrition part. Is there anything else that you found that you want to share about your experience with that?
Ray: 45:22
So, I’d like to, you know, when I was first diagnosed, I found out all this stuff on my own, you know. I read Mayo Clinic, Helpline, Healthline, Cleveland Clinic, I went through all these things, Arthritis Foundation, all the different places to find information and put it all together. And I had a pretty good idea. And then, over six years, you know, I wasn’t keeping up with it. I wasn’t keeping refreshed with it. And I took the Rheum to the THRIVE piece, and it was kinda like, it was, it was I knew a lot of the stuff. I had just forgotten. And it was good to hear it again for me. And then, there was so many, there were many new things in it as well. So, I just, yeah, it was really good. I was actually — this is hilarious. I was installing a kitchen, in someone’s house part time, a little carpentry work. And I would have it set up on the counter. And it would just play in the background while I was working. And I would listen to it. And that’s how I went through the class. And I would go back and replay modules and stuff like that. So, that’s how I did the whole Rheum to THRIVE piece, while I was working. It was really good. It was great. It was just perfect.
Cheryl: 46:45
I was gonna say, someone walks into that kitchen, and they’re like, “What are you listening to?” Well, that’s so great. And it is, it’s a funny thing to explain that, like you, yeah, I didn’t — like, with Rheum to THRIVE, I didn’t discover something that it’s like, proprietary, and I’m like, you can only learn it through Rheum to THRIVE, right? It’s information that is in the scientific literature that’s been reported on, you know, in terms of what ways to manage your condition, you know, tools for pain and fatigue, habits like lifestyle, nutrition, sleep, stress management, exercise, and then values, valued activities, mental health. You know, you can piecemeal it together on your own.
But what I find valuable is that, you know, there’s a person — me — who’s, you know, been there and is trying to present it to you kind of in a logical manner to where you don’t have to do that executive functioning process of, you know, having to sift through website after website, you know. But and like you said, we have to learn and relearn over time, you know, I’m certainly, I’m 21 years into an RA diagnosis. And I’m constantly relearning things or remembering things that, you know, I had initially learned and then forgotten about. So, yeah, I’m glad. I’m glad to hear that you had a good, you know, a good experience with it.
Ray: 48:18
Yeah, it even, you know, it’s helped me more in my doctor’s appointments. Because when you kind of understand more, and you can speak their speak, they kind of maybe listen a little, we’ll say differently, I won’t say better. I’ll say they maybe listen a little differently. So, it was, and to your point, I could not have gone out and grabbed all that stuff, and put all that stuff into a funnel, and brought it down to me, the way it was done like your program, Rheum to THRIVE. I couldn’t have. It took me years.
Cheryl: 49:04
Yeah, it is. It’s time intensive, and it’s overwhelming to try to do it on your own, you know. And there were parts of it that even when I was putting the course together, I actually, my very first iteration of it was in May 2020. And I actually said, I’m not even going to touch nutrition in this course. Everything else I covered that’s still in the course now in an updated version, that I did like a major update in 2023. But in 2020, I had all the major components of like the THRIVE framework of like tools for pain and fatigue, habits, relationships, that’s the R, inner world, values and valued activities, and executive functions. I had those all but I said, nutrition is such an overwhelming topic, even to me. I said I really just recommend seeing a nutritionist or a registered dietician.
But eventually I decided you know what, I need, I actually can devote the time to at least helping people get the big picture of it. I still think it’s a great idea to see a registered dietician that specializes in autoimmune conditions. But I, because so many people, their first question is about nutrition when it comes to, you know, non-pharmacological ways of managing it. But anyway, point being, it’s overwhelming, even to someone like me who’s like voracious about learning about these things. It’s still a lot. So, thank you so much for, for sharing about that. And then, couple of just last few questions. You know, I’m starting to ask people this question, and it’s fine if it’s hard to answer, but is there anything you would do differently? Like reflecting back on your journey with, you know, AS and RA and OA, if you were diagnosed today, would you do anything differently?
Ray: 51:08
No. I just — no, because I wouldn’t know. I mean, knowing everything I know now?
Cheryl: 51:16
Yeah. Yeah.
Ray: 51:18
Yeah. So, I think the one — I would be much nicer to myself, I think, or kinder to myself, or gentle to myself, I don’t know. Like, understanding.
Cheryl: 51:35
That’s huge.
Ray: 51:37
I mean, I was really hard on myself. I, yeah, I was very hard on myself.
Cheryl: 51:45
Did you like blame yourself somehow for having it?
Ray: 51:48
Mm-hmm. Yes. Yes.
Cheryl: 51:50
That’s totally common. You know, I just, like, I always remind people when they blame themselves, children get rheumatoid arthritis. You know, they get juvenile idiopathic arthritis, which is a similar, not identical condition. You know, children who are eight-months-old can get, you know, inflammatory arthritis. So, it’s not, they didn’t obviously do anything, you know, but that’s logic, our logic doesn’t always communicate to our emotions, right.
Ray: 52:16
I mean, I just, I wanted to know why. Yeah, it was really — yeah, I just think I wouldn’t be so focused on why, I would probably try to find acceptance maybe earlier. I think if I may be accepted that I had rheumatoid arthritis five years ago, or six years ago, it would have been easier. So, yes, I would have done things differently, I guess.
Cheryl: 52:54
Yeah. No, no, thank you. Yeah, it’s so maybe I should word the question if you knew now, if you knew what you know now then, would you do something different? So, that song, “I wish I knew that I knew what I knew now, when I was younger.”
Ray: 53:12
Yeah, I’m not a person that just believes that, you know. If someone, you know, would you do anything different? I’m pretty much, yeah, I would do a lot of things different in life. I just didn’t understand it. I was trying to think of what I could do differently.
Cheryl: 53:27
Oh, I see what you mean. Yeah. To not get it or something. Yeah. Yeah. No, it’s, there’s a great book I recommend people check out called ‘Fooled By Randomness’, about how a lot of things in life are random. And we get fooled into thinking that we’re in control. We’re really not, you know, I mean, I got, you know, a random virus that probably triggered my RA along with my inherited predisposition due to family history. And like, I can do anything about what happened, you know, blaming myself is not, you know, but anyway, logic. I can say that to myself, and my emotions believe me. But there are other times when I try to apply logic and my emotions are like, I don’t care. I still feel bad.
Ray: 54:09
Yeah, and that’s good. I understand that. I understand that.
Cheryl: 54:14
Yeah, yeah. And do you, here are some rapid-fire questions, if you have, do you have time to go a little over?
Ray: 54:22
Yes.
Cheryl: 54:23
No pressure. Okay. Do you have a favorite arthritis gadget or tool in your toolbox?
Ray: 54:29
So, yes, I would say long-handled brushes. I love those. I got those from you. I saw you using long-handled brushes three, four years ago, maybe. I started using them on pans and dishes. Because I do a lot of the housework now because my wife still works. So, I’m trying to pull my weight, so but it makes it not so much a rapid-fire answer. Sorry.
Cheryl: 55:01
Oh, that is — no, believe me. And then, the next one is like could be a three-hour long conversation. But I mean, what you just said about — the next question is going to be best words of wisdom for newly diagnosed patients, which I’m assuming is similar to what you said before. Be kind to yourself, you know. Is there anything else? Yeah.
Ray: 55:22
Yeah, I mean, just, I think, just be gentle with yourself. Keep your circle small. Don’t, you know, just keep your circle small. It’s okay. The people around you, people you trust, it shouldn’t be like I trust 3000 people. It’s like two or three people. Keep it small.
Cheryl: 55:49
Quality over quantity, maybe?
Ray: 55:51
Absolutely. For this, yeah. For this, yes.
Cheryl: 55:55
That makes sense. This is my pop culture question not related to arthritis at all. But I love to always hear, do you have a favorite like movie or book or show you’ve been watching recently?
Ray: 56:10
So, I like, I think my favorite movie and book is ‘River Runners’. And I’m really bad with with pulling names up and stuff. But the man’s name is Scott and he was a kayaker, river kayaker, and kayaked these massive rivers all over the world and found out he had cancer and he does well enough, and he went to kayak one more big river and passed. And that, to me, was an inspiration that just pulls me every day to just, let’s go one more step.
Cheryl: 56:49
Wow. I love that. I love memoirs of inspirational people.
Ray: 56:56
‘River Runners’. Loved it.
Cheryl: 55:58
Okay, I’m gonna check that one out. Do you have a favorite mantra or inspirational saying?
It’s okay if you don’t.
Ray: 57:06
I do. I actually do. And its simplicity. That’s just my word. It’s not gonna take you outside and show you for science. It’s simple, you know? It’s just, it’s not complicated. So, for me, for me, simplicity is this real good thing. I’m not, I can’t do complicated anymore.
Cheryl: 57:29
Oh, jeez. Well, I’m inspired by that because I really need to, that resonates as something aspirational for me. It’s not what I’m currently doing. And what is something that has been bringing you joy lately?
Ray: 57:48
Oh, that’s a tough one. Yeah, I’ve been struggling. You know, my routine. There’s — I can say there’s a joy in that because it’s comforting. And there’s a lot going on right now that’s out of control. And so, my routine, I think, yeah, that gives me joy. I get up and I, yeah.
Cheryl: 58:16
What are the things in your daily routine?
Ray: 58:20
So, daily, I get up. I have my healthy shake in the morning. And then, I’m off to the gym. And then usually I’m there for two-and-a-half hours.
Cheryl: 58:30
Wow!
Ray: 58:31
Yeah. Every day.
Cheryl: 58:33
That’s amazing. Sorry. I’m like, whoa.
Ray: 58:37
Every day. Oh, it’s, yeah. I love to work out. And it’s, you know, I’ll be kayaking soon. I’m kind of upset. I mentioned earlier that I won’t be able to go into water. I was planning to do some cave diving. And I won’t be able to make the dive that I wanted to make, because I can’t get wet. So.
Cheryl: 59:06
Yeah, I’m so sorry.
Ray: 59:10
But I still do, you know, I still do really hard things. I still do really important — I hurt myself. I get hurt. But I still do hard things.
Cheryl: 59:26
Yeah, I mean, it’s about choosing what you value in life, you know, and you, it sounds like you definitely value being very active and, you know, doing those things that bring that you love, like kayaking and being in nature. Last one, what does it mean to you to live a good life and thrive with rheumatic disease?
Ray: 59:52
So, to me, it means, it means yes, it means being able to do things. And I think like to be able to go to like visiting with my family when they want to go, to be able to go run with my young nieces and nephews, take them kayaking, take them swimming to see manatee, to do those things and still be a really active uncle. I’m a fun-cle. And so, that to me is important because I don’t — I just want them to remember, you know, Uncle Ray as he didn’t have arthritis, Uncle Ray was like firing away, he just like fired till the end. The way I wanted to go, you know?
Cheryl: 1:00:40
That’s beautiful. And for those listening who don’t know fun-cle means ‘fun uncle’, just FYI, in case you haven’t heard of it. Yeah. I love it. That’s such a great note to end on. Where can people find you online?
Ray: 1:00:57
So, I’m on Instagram. And it’s @Bionic_Ra, I think hyphen underneath it.
Cheryl: 1:01:06
Underscore. Bionic, underscore, Ra.
Ray: 1:01:10
@Bionic_Ra.
Cheryl: 1:01:13
Yep. Yeah. Well, thank you so much. I really think this episode’s gonna resonate with a lot of people and I can’t wait to share it. And those listening, you can find a full episode, show notes, and a transcript and a video of this conversation on The Arthritis Life podcast or the videos on also the YouTube — sorry, on the Arthritis Life website, www.myarthritislife.net, or my YouTube channel, which you could just search Arthritis Life and it comes up. So, thank you so much, Ray. We’ll talk to you later.
Ray: 1:01:48
Thank you. Take care.
Cheryl: 1:01:49
Bye now. You too. Bye.
