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Summary:
Imagine being told at age 4 that you likely wouldn’t live past 21 due to severe juvenile idiopathic arthritis. Now, on the eve of his 50th birthday, Dr. Kaleb Michaud reflects on his incredible journey from a young arthritis patient to a PhD arthritis researcher. Through his experiences, Dr. Kaleb offers practical advice on navigating life with rheumatoid arthritis, focusing on self-management strategies like getting enough rest and using ergonomic tools.
He and Cheryl also dive into pain management, discussing evolving research on the potential benefits of cannabis. Dr. Kaleb’s personal insights into balancing work and life offer hope for finding purpose and joy despite the challenges of living with arthritis. Together, they emphasize the importance of living meaningfully through activities like board games, time with family, and staying connected to a supportive community.
Episode at a glance:
- Personal Experiences and Resilience: Dr. Kaleb’s shares his personal journey with juvenile idiopathic arthritis, from diagnosis at age 3 to today.
- Self-Management & Lifestyle: Cheryl & Dr. Kaleb discuss strategies for managing physical pain through ergonomic tools, proper footwear, and weight management.
- Importance of Sleep: The critical role of good sleep in managing chronic illness, including the impact of sleep apnea and the benefits of CPAP therapy.
- Managing a dual role of patient and researcher: Dr. Kaleb reflects on his decision to “go public” with his diagnosis of JIA after being known as an arthritis researcher, and discusses the pros and cons of sharing your story publicly
- Cannabis and Pain Management: The evolving research and patient experiences with cannabis as a tool for managing chronic pain, despite its legal and research limitations.
- Misinformation and Evidence-Based Care: The challenge of navigating biased or incomplete information about treatments and the importance of relying on evidence-based medicine.
- Arthritis Research and the Role of Learning from the Patient’s lived experience: Dr Kaleb explains the importance of the FORWARD databank.com for ongoing research to improve patient outcomes.
- Entertainment and Personal Interests: The role of hobbies, such as board games and movies, in providing enjoyment and coping with chronic illness.
Medical disclaimer:
All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Episode Sponsors
Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!
Speaker Bios:
Dr Kaleb Michaud
As a life-long patient, Dr. Michaud’s experiences have powered his passion and dedication to improve rheumatology and patient outcomes. He serves as Director of Forward, The National Databank for Rheumatic Diseases, a long-term open-cohort observational study with over 50,000 enrolled participants. He leads the University of Nebraska Medical Center RAIN clinical database and collaborates with VARA, RISE, and other registries. A scholar in pharmacoepidemiology, health informatics, and cost-effectiveness, Dr. Michaud prioritizes mentoring and volunteering to grow the next generation of healers, scientists, and difference-makers. (that’s from ACR – Diagnosed at age 3 with JRA, RA, chronic sinusitis, osteopenia, kidney stones, and as of this summer, gout!
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
- Speaker links
- Cheryl’s Arthritis Life Pages:
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Dr. Kaleb Michaud)
Episode 139
Cheryl: 00:00
I’m so excited today to have Dr Kaleb Michaud. He is a rheumatology friend of mine who I’ve known for years online and finally got to meet in person last year. So, welcome to the Arthritis Life podcast!
Dr. Kaleb: 00:13
Thank you so much, Cheryl. It’s a pleasure to be here.
Cheryl: 00:16
I’m so happy to have you. And if you could just let the audience know, you know, where do you live and what is your relationship to arthritis?
Dr. Kaleb: 00:24
So, I am here in Omaha, Nebraska, United States, in my University of Nebraska Medical Center office where I am a professor, and my relationship to arthritis is so long. Can I tell you, it was my birthday recently.
Cheryl: 00:43
Oh, yay! Happy birthday.
Dr. Kaleb: 00:44
I just turned the big 5-0. And which means it’ll be coming up 47 years with arthritis. So, that’s my relationship with it. It’s been a lifelong, it’s pretty much all I know as far as personal experience, as well as the main thing I do research here with at the university.
Cheryl: 01:06
Yeah, that’s incredible. Yes, your relationship, you could classify as lifelong relationship to arthritis.
Dr. Kaleb: 01:14
And my main profession switched to doing rheumatology research, and I focus primarily on health outcomes and patient registries and many disease areas, but really focused on rheumatoid arthritis, lupus, psoriasis and psoriatic arthritis, and I pretty much do everything research with people directly or through surveys that aren’t clinical trials and aren’t, like, bench, microscope, complex that kind of stuff. So.
Cheryl: 01:48
Yeah, you’re really about, like, what, how we can improve quality of life, would that be right to say. Yeah, I love that. As both an RA, rheumatoid arthritis, patient and occupational therapist, that is, like, what I’m most passionate about as well. And so, we’re going to delve more into research. So, just dangle that in front of everyone. But first, let’s start with your personal story. You mentioned you were diagnosed at age three. How did that happen? And lead me through.
Dr. Kaleb: 02:17
So, I did research on this, because when you’re three, you don’t remember so much, and I spent more time with my parents and talking about, you know, now that I’m a parent, get to say, you know, what was it like? What was going on? And got access to my patient notes back in 1977, 1978 as well. And apparently, I was limping. I had a major limp, and they saw I had a swollen right knee. And after so many days of this and crying and not being able to walk that, and my mother just had my baby sister, who was 1 at this point, so I could, I had to stumble along while she was carrying a baby.
I was admitted to the hospital. They did a biopsy on my right knee. And I, back then, you stayed in the hospital, and I was spent a whole month, November through December I don’t know if it included Christmas or not, but it was a long time and very painful in which I was diagnosed with juvenile rheumatoid arthritis back then, or JRA. And I didn’t know what it meant all I know that it was very painful and that I had trouble walking, and they gave me lots of hot baths and lots of aspirin. And I had a big cast on my leg for a while. So, that’s how it started.
Cheryl: 03:45
Wow. And yeah, you had, you gave a great talk at the American College of Rheumatology, you know, Annual Conference last year in 2023 where you had lots of pictures from that time which were really incredible. But I usually ask people, what was your emotional response to your diagnosis? But obviously you were three, so.
Dr. Kaleb: 04:07
I cried a lot. I know that. But I think most of those pictures, you saw me smiling because I was getting people to come visit me in the hospital, and then when they took those pictures, and I think that was really nice to have friends and family come see me. And then, I got ice cream cones occasionally. But then, you know, this continued for many years, and I think I didn’t realize that the other health problems I had were all completely related to my arthritis. And so, you know, when I was rushed to the ER with a mono infection and almost died, you know, my first experience with an ambulance, you know.
And I don’t know if they knew this either, that was related to having an autoimmune condition that was not in control. And with my only treatment as aspirin at the time. And taking up up to eight grams of aspirin to the point where I was getting tinnitus, ringing ears, breathing problems. And again, I thought that was arthritis related, but apparently that was a side effect to my pills. So, you know, in and out of wheelchairs, braces on my arms and legs, and having to sleep with them. And you know, this is what they, the state of the art in the 70s and the 80s, and then finally, getting my first sort of real medicine, being gold injections, which were incredibly painful and unclear that that did much.
It definitely took a heavy toll on me and my family. And I think what happened to me, and emotionally, I think looking back on it, I felt — and I was told that I wasn’t going to live very long, and that I basically internalized that. That I wasn’t, which is why it’s a big deal that I just turned 50, that I wasn’t going to live past 26, that I needed to do as much as I could while I could. And, you know, and I grew up in small town Kansas, and I also internalized that I had done something wrong to deserve this, you know. Sort of a, I don’t know if that’s sort of a Protestant upbringing or what, but that I had to figure out and make up for it in some way. And that was part of my spiritual journey at a very young age.
Cheryl: 06:34
Wow, that’s a lot to put on a child. But I think it is common, whether it’s from Protestantism or whether it’s from just, I think, basic logic. A lot of times we say, okay, cause and effect, like we do X, like, I bumped my knee on the on the counter. It hurts. Like, I hurt, therefore, I must have done something. You just apply that logic. And I mean, I, honestly, I often use the example of children getting arthritis to say it’s not your fault if you get this autoimmune disease out of nowhere. Everyone wants to think there’s a reason, and so they can have a sense of control over it. Or think if I just, if I ate better, if I exercised, if I did whatever, I’m like, sometimes your immune system goes rogue and you couldn’t have done anything different. And sorry, this is my little pep talk to anyone listening.
Dr. Kaleb: 07:24
I completely agree. And so, when people you know ask for tidbits of like, what are some of the things I learned. One tidbit, not the current one that I use or reference a lot, but was hugely meaningful for me when I was about 12 or 13, my father would, you know, say this a lot, you know, when I complained about something. And he would say, “Well, life’s not fair.” And you know, he wasn’t the most friendliest individual, but when I internalized that it was actually completely freeing, the idea that I was not — what I did as a one- or two-year-old or three-year-old wasn’t fair, like, I wasn’t being punished for whatever I did at even younger ages, like the idea of an original sin. Like, basically life wasn’t fair, and bad things happen to good people and so on, and good things happen to bad people. And when I internalized that, I was like, wait a minute, I felt so much more freedom.
Cheryl: 08:27
Yeah, a hundred percent.
Dr. Kaleb: 08:30
Yeah. Like, life isn’t fair. You’re exactly right. And I was in such a good mood, and people are like, you are weird. I’m like, no, you don’t understand how much of a burden this is. You know, for me to be like, I’ve got to be good all the time to, like, I’m kind of like Job, you know, these are the punishments. They’re going to keep coming, and I have to do the best to show you know, anyway.
Cheryl: 08:49
Yeah, no, it’s so true. It’s very freeing to know that some of it’s out of your control. It’s scary at first to accept that, because we, you know, control is like the antidote. A sense of control is like the antidote to anxiety, right? So, not knowing that you’re not fully in control can lead to some anxiety, but it can also be like freeing you from the burden of thinking that you should have just done something different, this would not have happened.
Dr. Kaleb: 09:18
And I — or now that I’ve had this idea, I’m gonna add, I actually got a new rheumatic disease this summer.
Cheryl: 09:29
Oh no, you’re a collector.
Dr. Kaleb: 09:30
I know. On the way back from Europe, the European EULAR, the day I was leaving Vienna, I was in so much pain I could barely walk. And I would, normally, I would have gone to the ER, like, something bad is happening. But I’ve got this very expensive flight back to the US. I don’t want to miss it, so I suffered through it. And I get back and I have acute onset gout.
Cheryl: 09:55
Oh, not fair.
Dr. Kaleb: 09:57
Here’s the deal. I was like, I have no risk factors for gout. Like, you look at all the things that you’re supposed to do to not get gout, that’s me, and there’s no, like, having rheumatoid arthritis does not lead to gout. Like, it’s not anymore. It’s like, independent. And so, for me to get this additional rheumatic disease, I was just like, what? You know, I swore a lot.
Cheryl: 10:22
Oh, sorry. That’s awful.
Dr. Kaleb: 10:25
But, you know, life isn’t fair, and these things happen. And sometimes, I mean, it’s just how you respond, you know, it sucked so much. But at the same time, like, when somebody else said, “Oh, you’ve got the disease of kings or queens,” you know, like, okay, that’s one way to look at it, right, you know? But.
Cheryl: 10:42
Yeah, yeah. That’s so rough. That, yeah, it reminds me when I got a pilonidal cyst, which is like a cyst on your tailbone. They’re like, I’m like, this, you know, tiny, like, 35 year old woman at the time. And they’re like, yeah, this usually happens to, like, older, hairy, sedentary, overweight men. And they’re like, we don’t know why you —
Dr. Kaleb: 11:02
You don’t have any of those things.
Cheryl: 11:04
You’re like, I’m like, I mean, I have thick hair. They’re like, no, no. We’re talking like people who have, like, back hair, like a lot of, you know. And I’m like, okay, yeah, I know. Yeah. It just happened. It just happened.
Dr. Kaleb: 11:13
And most of the people who got what I got were girls or young women. And growing up and meeting a support group of young adults with rheumatoid arthritis and similar diseases was so empowering and so impactful, but also a reminder that I was unusual in many ways. Yeah.
Cheryl: 11:34
Yeah, and so, yeah, you know, you were, we started with childhood. I’m going to try to be chronological. But, you know, what was it like being a teenager with JIA before this? I know being, having — oh, it’s called JIA now, juvenile idiopathic arthritis. Oh, and you mentioned EULAR which is the European League Against Rheumatism, or they changed the name now, but that’s the conference that was in Europe for rheumatology.
Dr. Kaleb: 11:58
Yeah, it’s the big one with 14,000 people. So, it was good.
Cheryl: 12:02
I really want to go. I’ve never been. Anyway. Back to you. So, having —
Dr. Kaleb: 12:09
I was a normal, horrible all over the place, hormonal teenage. And I think I hit puberty later, so I was even smaller than I should be. I was, you know, I have very thin arms, and that’s part of growing up with this. It changes my growth plates. I come from a larger family, and so I know that even though I’m six foot tall, I was supposed to be even taller and bigger. And that showed. I think emotional roller coasters were par for the course. And then, I think, so, one of the things I internalized is that I wasn’t going to be a star athlete. I wasn’t going to be able to do all the things that you know, what you grew up wanting to do. I said, well, I’m going to make the most of it. If I’m in a wheelchair most of the time or not, I’m going to just move this brain around and learn as much about what the world, how the world works, why it works the way it does, and see how many problems I can help fix along the way.
And I was determined to study physics and astrophysics and particle physics, and sort of help do that at the most fundamental levels. And that did lead to undergraduate at University of Rochester and graduate school at Stanford, where I got my PhD in physics. But one of the many things that they did with this disease is they, they said, well, you have to wait till you’re an adult. You have to wait till you’re an adult, until you can start your real drugs. You can wait till you’re adult until we can do the surgeries. And I had my wrists replaced. This is an artificial wrist. You can sort of see that that’s not attached there. This one was replaced, and then they fused it. So, I can’t actually, like, I can not do that here. And that happened when I was 23, 24. And I tried to return back to my lab where I was getting my PhD, and the folks were like, “You know, this person just tore their ACL and they’re back after a couple weeks. Why can’t you be back?” I’m like, this is a six-month rehab process, and it was not a good — it was not good support group.
So, I took a leave of absence and went back to small town Kansas, in this case, bigger town Kansas, Wichita, to work with my rheumatologist, the one who diagnosed me with JRA when I was three. He says he needed a statistician, and I was looking for a reason to come back home and have that better support that I needed. And he told me about this databank called the National Databank for Rheumatic Diseases. And in 2001, I joined him as a statistician. And for two years we were just in harmony. He was still seeing patients, but I would be back there coding and doing programs and doing analysis, and he would come in between patients with ideas or singing opera, depending on his mood. And we just had a fantastic time.
And I decided, you know what? I want to do this. I’m going to change my research to this and make a difference in people who have arthritis, and apply it to them. People are messy. It’s even more complicated than the physics, where everything is clean. You’ve got particles. You control the process. Where people are have so many things affecting them, and it actually became a great source of joy to know that what I was doing had a more immediate effect on the people around me, people that I was meeting. So, I went back and finished my PhD, changing fields.
Cheryl: 15:57
Oh, okay. Because also, I didn’t know your PhD was in physics. Okay, so it started out in physics, and then what did it become in?
Dr. Kaleb: 16:04
It stayed physics, because in order to switch fields, I’d have to start over for many more years.
Cheryl: 16:09
That’s what I thought. Yeah.
Dr. Kaleb: 16:11
So, I took a whole bunch of other courses, but I kept the degree in physics. And they basically said, you know, as long as it’s heavy enough in the numbers and algorithms, it’s okay, just don’t teach physics anywhere.
Cheryl: 16:23
I see. Okay, so it’s more in like statistics?
Dr. Kaleb: 16:27
And epidemiology, yeah.
Cheryl: 16:29
Ah, okay. I love people — I’m sorry. I’m always thinking of episode titles as people are talking. So, I’m listening to you, but also part of my brain is thinking about titles. I’m like, people are messier than particle physics.
Dr. Kaleb: 16:41
Oh, people are so messy. Like, in physics, we pride ourselves in approximating everything so you can get an answer. Like, okay, imagine a horse and a horse, like, you, because you basically make the horse into a sphere, and then you become, you know, interactions. And people, you know, there’s so many things that affect our day, like in the last hour, and how, what you’re feeling and how you’re processing and what, why you make the choices you make. And this is exactly why marketing exists, right? They want to know, and why economics exist. It’s the sort of the study of how people behave. And why do they behave that way?
Cheryl: 17:22
Oh, my gosh, yeah, I find that very fascinating. And so, I remember you saying at the, your keynote talk at the conference last year that you had, for many years, you know, performing and helping with research in the rheumatology world, but you are not talking publicly about you being a patient, too. And that’s always, that is a common topic that comes up in my like Rheum to THRIVE support groups and just comes up in the podcast and people’s journeys, deciding when and where to, quote unquote, kind of ‘come out’, to borrow language from the gay community, LGBTQ, like when to, when and how and whether to do that in different contexts, whether it’s work or home. Yeah, what was your thought process around all that?
Dr. Kaleb: 18:10
So, with work, I was surprised, because I went to this American College of Rheumatology conference in 2001. That was a huge conference in San Francisco. And I, you know, I’m going as a new entry to this whole world and learning so much and really enjoying it. And I’m seeing some patients, a few patients there interacting, and they’re treated very differently. And I’m seeing this again and again. And then, I had one patient, person who was a patient, who was there at the conference come up to me, like, “So, how long have you had it?” And I’m like, oh! You know, I was priding myself and having it be invisible and it kind of upset me because, like, damn it, I didn’t want people to know that I had arthritis.
I didn’t want them to be able to tell, because I was in my mid-20s, and I, you know, single and — and then, when I told one rheumatologist there, he immediately went into, “Oh yes, well, I can tell now,” because he’s examining me and looking through me and. And then, he completely just discounted anything that I was presenting at the poster. And it was more sort of focusing me and treating me very differently. And this happened, you know, a couple more conferences I went to. And so, I basically learned not to say anything and to hide it as much as possible. I also learned to do the same thing dating, because if you bring it up too early, it scares people away. Because, like, okay, I don’t, I don’t want to deal with that as well. So, that was another unfortunate aspect of being single and trying to, yeah.
Cheryl: 19:54
No, and I think we’re — it’s amazing how much has changed. I mean, a lot of things have stayed the same too. But, you know, I think there’s a lot more focus nowadays and on, like disability pride and like being able to be, you know, open about things. And I think there’s, for a long time, been more of a, you know, back in the day, not just say you’re old. I’m 43, I’m turning 43 next month. But, you know.
Dr. Kaleb: 20:16
Are you really?
Cheryl: 20:17
Yeah.
Dr. Kaleb: 20:18
When you said a long time ago, 35, I was like, last year?
Cheryl: 20:21
Yeah, no, no. I’m trying to — actually, I had Charlie when I was 34 so, yeah, that was 36. Yeah, yeah, I know. It’s the, it’s the skin care. It’s the sunscreen. Being anxious about getting a sunburn has led to me looking younger.
Dr. Kaleb: 20:37
Our, as people with these diseases, have better skin,
Cheryl: 20:42
I think so. I think —
Dr. Kaleb: 20:43
In general, in general.
Cheryl: 20:44
I also think I have a little bit of a loose connective tissue, so I think apparently that helps with, yeah.
Dr. Kaleb: 20:50
I was told that this was a real thing, and it’s due especially, I mean, I’ve had a lifetime of NSAIDs, and it’s related to NSAID use.
Cheryl: 20:58
Oh, okay, well.
Dr. Kaleb: 20:59
I did not know that.
Cheryl: 21:00
This is not medical advice, anyone listening. But with dating, I think I’m wondering if also like you are, you know, a straight male, as far as I know. And I think there are different expectations on, you know, men than women. And so, I wonder if that, you know, gave you, made you feel different pressures and stuff.
Dr. Kaleb: 21:21
I never liked to hide who I was, and so I revealed this fairly early in dating or conversations. But it was always like knowing that when I was going to come out to see what would happen, because, you know, they’d be like, okay, well, very nice to meet you and have a good life kind of thing. And that would often happen.
I mean, I get angry and life’s not fair kind of thing, but it’s, it is what it is. Like, you have every right to not want to have to deal with that in your partner. And I think for me and others, and this is very much a real thing, if somebody else has the same condition as me, it’s even stronger as a repellent. We understand each other very well, yeah, but for having kids and the idea of a family, you’re like, well, you kind of want somebody else who can be there when you’re having a bad day, or vice versa. And you, I mean, I don’t know about you, but maybe unconsciously, there’s this thought that I really don’t want to have kids have this issue, too.
Cheryl: 22:23
That’s just what’s weird about me being a very optimistic person. It literally didn’t cross my mind. Because I would say when the time I got pregnant, I was one of those, like, they were, I had been heavily medicated and successfully medicated for rheumatoid arthritis for the 10 years before, after my diagnosis, before I got pregnant. I did have one medication ‘fail’, quote unquote, after six years, and so I had to switch to a new one. But my idea was very simplistic about how I was going to manage my RA. I was just going to keep taking medications.
So, to me, it was like, right, and we’re living in the best era ever for rheumatoid arthritis treatment. So, yes, I understand that my child has, instead of a 1% lifetime chance of developing RA, they have a 2% chance. Still, it’s unlikely. And like, it kind of crossed my mind, but it wasn’t at all — I think that’s weird. I think most people think about it, because at least in the support groups and stuff, it’s definitely come up. I was just like, that’s fine. Like, but that’s just me.
Dr. Kaleb: 23:20
I mean, and part of me felt bad because, like, some of these people who have other conditions, I love dearly and are some of my closest friends. But I think, you know, when I was looking, who I was looking for in a partner was probably, yeah, anyway, so I was more sympathetic to people who are, like, didn’t want to see me again after I told them. Like, okay, yeah, it is — it’s your right and your choice. But it’s also like one of those things where you can’t, you can’t change it. You couldn’t change it. It’s kind of like seeing somebody, like, who wouldn’t date somebody with certain skin color or certain — I was like, yeah, I mean, it’s your preference. It’s not something I agree with, but it’s already, like, I can’t —
Cheryl: 24:04
Yeah, but disability is the only minority group anyone can be part of it at any time. So, I feel like, to me, yeah, I’m not going to put my eggs in the a basket or assume that just because someone’s able-bodied today, they’re going to be able-bodied in five years. I mean, I know, and this has come up a lot with a lot of people who are like, maybe they’re — I’m thinking about a couple of people on the support groups were like, they were actually the most able-bodied one in their relationship, and they came down with severe case of rheumatoid arthritis after the birth of their third child. And they’re like, okay, so I made all these life choices based on this assumption that I’m doing, I’m gonna be fine, and then maybe my partner has a chronic illness, and now it’s like, we’re both in this boat, and it could just happen to anyone, right? So.
Dr. Kaleb: 24:46
But that’s the investment that you put in, and you’re, I mean, people break up after that still; whereas, if I tell somebody early or like, we’ve been dating for a while, I think it hurts a lot more when there’s attachment. And then, having another person realize, like, they’re not willing to be in it, versus early enough where it feels like, okay, I’m not attached them. So, if they make this decision, like —
Cheryl: 25:08
That’s very true. It’s not as personal, no, a hundred percent. And you’re so right that unfortunately, having a partner with someone having a disability or having a disabled child is an unfortunate predictor of divorce. But yeah, and you, but now you’re, you are — okay, now, I want to follow this thread, actually, if that’s okay, and then we’ll go back to the research once again. But so, how did you meet your, you know, your wife?
Dr. Kaleb: 25:34
We met at a research conference in Chicago in 2011 at the Medical Decision Making conference, and I was working with some researchers at Boston and Minnesota, and she was getting her PhD with the group at Minnesota. And I remember meeting her and asking her to join the other groups. And she’s like, “No, you go on. That’s fine.” But she said, “Hey, why don’t we talk a little bit more?” Because she wanted to learn more about rheumatology, and they were doing something outside of their normal field with looking at cost effectiveness of the biologics. And so, we stayed in touch on that project, and she asked if she could visit Omaha. I said yes, and I gave her the tour. And about six months later, we decided to start a relationship. And she’s now, she’s a faculty here as well. She does research and trying, in the public health, trying to help people prevent them from getting diabetes and help them quit vaping and smoking.
Cheryl: 26:40
Oh, wow. Wow. Okay, those are two tall orders for sure. But that’s like critical research. That’s amazing that I know with being academics, it’s very hard to both get jobs in the same place. So, that’s —
Dr. Kaleb: 26:53
And we’re big nerds, and we’re proud of it. I mean, this is what we do every day. Our kids both have these same initials of the Medical Decision Making meeting that we met.
Cheryl: 27:05
Oh, my God, this is amazing. I feel like this is a rock song in the making. What is it?
Dr. Kaleb: 27:10
MDM, they both have MDM. Yeah.
Cheryl: 27:13
I love it. I love that. That is so adorable. And I do, I want to, I know that people are gonna wonder about, you know, what was it like — a lot of times, the people I have on the podcast, you know, for rheumatoid arthritis, are more commonly women than men. And just statistically, and also —
Dr. Kaleb: 27:34
They’re affected more.
Cheryl: 27:35
Well, and I think I’m on social media a lot, and a lot of women, potentially, are more open with, you know, sharing their stories and stuff there. But, you know, what was it like for you when the kids were little? Was it hard, you know, on your joints, on your hands, being able to pick them up, or fatigue wise? I mean, it’s hard for everyone having babies, like.
Dr. Kaleb: 27:53
It was, it was horrible, but it was kind of, I mean, I’m laughing about it now, because it’s like they’re six- and eight-years-old now, which is a huge difference than when they were born. But I don’t do well if I don’t get a good night’s sleep. I flare and I can’t function. And so, being there in the same room and supporting the baby who needed to be fed all night long. We were both miserable, and I was useless. And so, after a couple of nights of that, like, okay, well, I need to sleep in a different room. I need to get a good night’s sleep, and then things were much better.
And I, basically, I’m a researcher. I talked to lots of other friends who had babies, and a lot of them were not doing very well. And I think a lot of the women were complaining to me that the men were not doing enough around the house, not doing enough to help. They felt that they were more on their own. And so, I promised my wife. I said, hey, you know, as long as you are breastfeeding, I will change the diapers. Now, I didn’t realize how big of a deal that would be when I said it.
Cheryl: 29:03
I’m laughing, just because that’s really hard when your hands are hurting.
Dr. Kaleb: 29:07
Well, there’s that, one. And two, what I learned the hard way is that once, especially when they’re in daycare, they get exposed a lot of things. And I wash my hands a lot, but I got exposed to a lot of things, so I was getting sick all the time the first couple of years. And so, everything they had I had, it would just be a cycle. And like this is, I’ve never been sick so much my entire life. So, and I didn’t stop when she stopped breastfeeding, so I kept on going, because I think she just got used to me doing that. So, like, wait a minute, wait a minute.
Cheryl: 29:46
Oh no, it’s really hard. It’s like, one of those things where everyone thinks that they do, like, 60% of the household labor. Like, it’s really hard to have that sense of that you’re both equally doing stuff.
Dr. Kaleb: 29:58
Yeah, and I think one of the stories I talked about last year was before we decided to have kids, my rheumatologist saying, “Well, you’ve been on methotrexate for so many years, we’re gonna have to go off of it for six months and then freeze your sperm, and then you can have babies.” Like, what? What? What?
Cheryl: 30:19
Why not just freeze them after methotrexate, after being on — or after going off methotrexate?
Dr. Kaleb: 30:25
You want them out of your system long enough, because, you know, the studies, the old studies, showed that it was spermagenic and also caused some other issues. And okay, I’m like, I don’t think this is true. I don’t, I think there needs to be some studies on this. And I encourage — almost all the studies have been looking at women, and that’s a very much known thing that methotrexate is, I mean, it’s horrible.
Cheryl: 30:49
Teratogenic. Is that the word, teratogenic?
Dr. Kaleb: 30:52
Teratogenic, I wasn’t sure if I should say that. But, I mean, a lot of people lost access to that when Roe versus Wade was removed last year because it’s seen as a possible abortive drug, because of that’s how bad it is for taking if you’re pregnant. So, for men, there’s a lot of similar assumptions that it would cause bad things and but they hadn’t done research on it. They’d only done it in rats in the 70s and 60s. And, basically, this is where you’re being optimistic. I’m like, I’m looking through and reaching out to all the men that I know have been on it and like, okay, everybody seemed to be okay. We’ll go with it and ignore this advice. And first child, no problem, no issues along the way. And then, after she was born, there was a paper, first paper published, showing that there’s no association with bad results with men taking it. So, I’m like, I felt redeemed, but it also was a bit of a roll of the dice. And, yeah.
Cheryl: 31:58
Yeah, interesting. Yeah, I think —
Dr. Kaleb: 32:02
I went against my rheumatologist’s orders.
Cheryl: 32:05
Okay, I know. There’s, we all go rogues at some point. And, yeah, so you mentioned the importance of research. I do want to loop back, because I would love to give you a chance to talk more about the National Data Bank and Forward, and just what are the types of studies you’re doing, and how can patients get involved.
Dr. Kaleb: 32:25
So, it’s called Forward and we have a website called forwarddatabank.com or forwarddatabank.org. It used to be called the National Databank for Rheumatic Diseases. I changed the name a few years back because it just wasn’t very easy to say, so. And the reason we call it Forward is because keeping that optimistic tone, we want to move forward. We send out questionnaires to people with these conditions, and they answer questionnaires twice a year. They’re not short. And we have little monthly tidbits that can come out instead. But what happens, and we’ve been doing this since 1998, we have, you know, over 10-20,000 people who participate around the US from these questionnaires, we learn what works and what doesn’t. We learned about how bad pain is, how bad fatigue, how bad sleep, the different joints that are affected. Get advice from them, you know, physical function, all of the different treatments.
And as I try to tell the fellows here who are getting the rheumatology fellowship here at Nebraska, it is very possible that each of your patients will find a cure that works for them. Our goal is to learn from them, and learn because it doesn’t always apply and work for the other person, people around. Like, why are some things working? Why are some things not working? And it’s not just to roll the dice, like some people say. And this is what’s been going on for 25 years. And from this, you know, like 600 papers, tons of collaborations, and we provide anonymous data that you provide to researchers around the world, and we try to provide a lot of it back to the participants, because it is participant driven. People who have these conditions go through it, put the time and effort in, and we want to make sure it’s useful and valuable for them. But I will tell you, I mean, I used to, you know, poo-poo research like this. But the more we get participants to answer these questions, the more we can learn. We’ve learned so much from it. I just can’t sing phrases enough about it.
Cheryl: 34:34
Was it poo-poo because it wasn’t objective enough because it’s, quote unquote, ‘just’ patient —
Dr. Kaleb: 34:38
Oh yeah, oh yeah. I was definitely drinking the, yeah, you know, the rheumatologist I work with, they always say, “Oh, it’s gotta be joint counts, it’s gotta be sed rate or CRP.” It’s gotta be things that we do with the patient. And that is true to a point. But I can also tell you that answering 13 questions is much more predictive of your future than any joint count and blood test. It’s unfortunate. I wish it was the other way around. But answer those 13 questions have shown time and time again to be more valuable to showing your future prognosis than those other things in the clinic.
Cheryl: 35:20
Well, and I would argue also that tender joint count is also subjective. Like, I have, so I always have a hard time answering that to my doctor, because I’m like, well, yeah, it’s kind of tender.
Dr. Kaleb: 35:33
Squeeze harder. Okay, now it hurts.
Cheryl: 35:35
Yeah, like, it’s so I find that — anyway, okay, I’m gonna stop myself and going on a tangent. But the point is that, yeah, so if you’re a lot of people listening, a lot of people in my kind of online community that I’ve come across, they really do, they are looking for not just, it’s hilarious that they’re looking for the opposite of what rheumatologists are looking for sometimes. Okay, obviously, we all want our disease to go into remission and to feel no symptoms. That’s like, goal number one is to get everything feeling better. But assuming that you’re not a hundred percent there, you’re like, what can I do? Like, what can I do to reduce my fatigue, to reduce my pain? Just practical everyday tools. And it sounds like that your questionnaires might lead to other researchers being able to tap into it.
Dr. Kaleb: 36:21
And it is true that people who participate in research studies like this do live longer and do do better in general than those who don’t. But, you know, I mentioned this last week, a little bit of tongue in cheek. It’s because, at some level, people who don’t are sometimes doing so worse, so poorly, that they can’t participate. Or those who choose to do it might be more reflective, and might think about how they answer the question as like, you know, I don’t think about this very often. Now that I’m thinking about it, I am noticing some things here. I wonder if, you know, addressing that might help these other conditions or help these other areas.
And that has been known to happen. And I know that it works for me at some levels. I don’t like answering lots of questions all the time, but if I do it every six months, I feel like it’s sort of like, okay, there’s some important things that happen that I can be a little more reflective of. And especially the question about the global, they call it patient global, considering all the ways your condition affects you, rate how you’re doing. And there’s so many things that are affecting me. Like, how do I put it all in this little 100-point scale?
Cheryl: 37:35
Yeah, it’s, yeah, it’s really, it’s really hard. I mean, as an occupational therapist, yeah, everything that we, well, you do have some objective measures, but a lot of times it comes down to a lot of qualitative, like, you know, making degrees of improvement and not necessarily having these, like, massive objective numbers like you might see when they first came out with the biologics, where people were like, “Whoa, I went from like, every joint hurting to none of the joints,” you know. And I’m looking at the research library on the website right now. And like, for example, just to give a couple examples, there’s like, the publications that have come from this research, you know, or the data bank is like ‘The impact of menopause on functional status in women with rheumatoid arthritis’. That has been coming up a lot.
Dr. Kaleb: 38:24
That’s a big one. And it really sort of drew back the question of — sorry to cut you off there.
Cheryl: 38:31
No, please don’t. No, I was going to ask you more about that.
Dr. Kaleb: 38:33
Should be we revisiting getting hormone replacement therapy with women with rheumatoid arthritis going through menopause? And some people, I mean, because we’re finding, even though there was reasons for not to have it, but the huge impact of your hormones on your disease activity. And, you know, what is the best approach there? Because, you know, we’ve been — we as a group of patients in general — have been punished in the past by the cardiologist who took away some very good therapies because they caused heart attacks in people who did not have any inflammation, but they were actually really good for those of us who did have inflammation.
Cheryl: 39:11
Oh, I didn’t know that. Yeah.
Dr. Kaleb: 39:13
Oh, I’m speaking about Vioxx. And that was great for people with RA and inflammatory conditions. But if you were OA only, it was definitely increasing your heart attack risk. But anyway, I think hormone replacement therapy is one of those similar things where, overall, it caused, it slightly increased the risk for cardiovascular events, but they rarely looked at the subclass of people with RA and inflammatory conditions like this.
Cheryl: 39:44
Interesting. Yeah.
Dr. Kaleb: 39:45
Anyway, there’s more research to come out of that soon.
Cheryl: 39:49
I was just linking that in the show notes, so if people want to learn more. But yeah, what are some of your favorite, like, current publications or historical things that have come up.
Dr. Kaleb: 39:58
I’m currently looking at cannabis, cannabis use. More and more people are feeling comfortable talking about what they’ve been trying, what’s working, what’s not. And I’m very excited about what the future holds there, even though it does feel like we’re still in the Wild West and we’re far away from, you know, where it will be as a source of pain relief, not necessarily disease activity relief. But if you can help control some of the pain, because some of the pain we have is not going away once our disease is under control, and it’s very frustrating. As somebody who’s sort of low disease activity, I can be in a lot of pain from what has basically become like OA and other issues that have just come from a lifetime of RA.
Cheryl: 40:41
Now, would you say — how do you measure disease activity, when you’re saying —?
Dr. Kaleb: 40:45
From Forward, we do it primarily through the PS2 or sometimes people call the RAPID3 tool. It’s the global, like, considering all the ways you’re doing the pain and physical function and averaging those together. And that works for people with all conditions, not just rheumatoid arthritis.
Cheryl: 41:06
Yeah, yeah, okay, that’s helpful. No, I think I remember you presented a few times on cannabis in the last, or maybe it was the last couple conferences. They all start blending together. But it is something that people ask me a lot about, and I still feel a little, like, I don’t, I’m definitely not an expert in cannabis for pain by any means. Like, you know, there’re starting to be more access to, like, nurse educators that have special training and cannabis and stuff like that. But certainly, the patients seem to, you know, so many use it as an important tool in their pain toolbox.
Dr. Kaleb: 41:41
Yeah, and I’m not a proponent either way. All I know is the US seems to be far behind other countries because of the legal status. And what I hear from patients and people, especially people in other countries, is that it’s titrating the right dose of CBD and THC on the individual level is like pure personalized medicine to help people really control their pain from whatever the reasons and subsequent anxiety that comes from it. So.
Cheryl: 42:13
Yeah, I love the fact that it can work on both, like, yeah, as it can help some people CBD or CBN, or whatever, you know, there, again, there’s so such complexity to it, but some people use it for sleep, some people use it for anxiety, some use it for pain. And so, yeah, it’s great that again, like, you know, oftentimes I’ll hear patients say stuff like, “Well,” this is opening the can of worms, of like, diet. But sometimes they’ll be like, I’ll say, “Well, you know, the research is really clear, like that medications have the, you know, best likelihood of putting your disease in remission.” They’ll say something like, “Well, it’s because, like, there’s a lot of money in pharmaceuticals, but there’s not a lot of money in, like, diet,” you know.
Dr. Kaleb: 42:56
Oh. Oh, I wish it was the other — yeah. So, first of all.
Cheryl: 43:02
Feel free to get on any soapbox you want.
Dr. Kaleb: 43:03
Some of the best DMARDs, like methotrexate and hydroxychloroquine and other ones aren’t promoted even though they work so well because there’s not big money behind them. So, that statement is true. There’s a huge difference between a new drug that’s unpatented and what you’ll get pushed versus an older one that’s been around that getting new science on, one. Two, there’s actually a ton of money when it comes to nutrition and dietary products, and they’re not under nearly the same amount of restrictions on what they can advertise and see.
And I’ve been to other countries, and you see this, very unusual, where you watch TV, and you have commercials that look very expensive, nicely produced for supplements. And they’re showing these supplements as curing them of everything. And you know that’s not true. But you can’t tell but that country has different rules, where they’re allowed to do that for supplements. And you can do that here as well, but they’re not allowed to promote any prescription medicines, which is what they do in the US, which is unlike other countries.
Cheryl: 44:07
I didn’t know that that they were able — I thought the countries that didn’t allow promotion of or commercials for pharmaceuticals also didn’t allow promotion for supplements.
Dr. Kaleb: 44:16
There’s a mixture of that, too. But overall, you see so many more things that are basically supplements that look like they are the best thing, and the doctors are constantly fighting against this, because there’s so much more money in the supplement side of things.
Cheryl: 44:33
That, and that is — okay, yeah, I need to do a whole episode on this, because it’s really, it’s really fascinating from a psychological perspective, the ‘natural is better’ logical fallacy really seems to be very tough for people to overcome.
Dr. Kaleb: 44:49
I totally get that. I felt that way in many ways, but I had to experience it firsthand. Like, I had all of my childhood and young adult life. And then, finally 20, I’m turning 20, 21, and I finally go on methotrexate. And it was like a whole new world. Whole new world.
Cheryl: 45:08
Well, I feel like if I were — and I asked this to Lena Anderson, too, so this was, like a couple years ago when I had her on the podcast. But I feel like if I were you or her, who had, you know, experienced much more severe joint issues from their condition that I have because I was put so early, fast, aggressive onto the biologics plus methotrexate, but I feel like I’d be bitter towards the people who’d choose not to take the medications. It’s like, you don’t understand, like, I don’t know, maybe you’re a better person.
Dr. Kaleb: 45:39
Everybody gets to have their feeling. I had a very close friend who was diagnosed with lupus. And she said, I’m going to beat this with holistic approach, only natural ingredients, natural diet. And I’m like, power to you. I’m happy for you. But I’m pretty sure you should take hydroxychloroquine. But it’s like, nope, nope, I’m not going to take that poison. Two, three years later, she had a flare. Was in the ER, and after switching lots of rheumatologists to try to find someone who would, you know, help her do the way she wanted to, and she was on hydroxychloroquine and prednisone. And she’s like, I was so naive. Like, this is so much better for me. And I almost died because of it. And, you know, I’m glad she’s okay, and she’s actually gotten a lot better with another therapy since then, but it’s unfortunate that she had to suffer and go through that to figure that out, because people like when I experience it at some level.
Cheryl: 46:36
It is, it is really tough. I don’t mean to be, I don’t mean to be flippant about people who make the choice not to. It is, for me, it is all about in whether or not that choice is informed. If you have all the information accurately in front of you that’s not biased, and you choose not to medicate, that is totally fine. I respect that, and that’s obviously not my choice. It’s your life. But I think what kills me is seeing people who think they have, they’re informed, but they’re actually been informed by biased information.
Dr. Kaleb: 47:06
Get evidence. Get evidence. That’s right.
Cheryl: 47:09
That’s why we need research.
Dr. Kaleb: 47:11
That’s right, that’s right. I can’t — yeah. And the people who do research and read the research are going to be, you’re better for physicians for you as well, because they’re going to be a little bit more on top of why it is better and not just doing what they’re told. That’s so true.
Cheryl: 47:26
Well, okay, and I’m trying to be mindful of time now.
Dr. Kaleb: 47:30
We should totally talk again.
Cheryl: 47:31
Yeah, we definitely should. Yeah, yes, this is just part one. But what are some of your favorite self-management tools today that you use?
Dr. Kaleb: 47:39
So, I think by far the most important one is, how do you get a good night’s sleep? I mean, I think that is so important. So, once, and one of the ways I ended up doing is, again, I don’t fit the bill for this at all, but I found out, complained from friends and partners, that I snored. Yeah, so I got, did a sleep study, and it was a horrible experience at the time, but I was diagnosed with chronic obstruction sleep apnea, obstructive sleep apnea, OSA. And got a CPAP machine, and I hated it, and I refused it, and I sort of fought with it for a couple years. But when I found something that finally worked has been revolutionary for me. And that question about how much time in the morning when you wake up, are you stiff and sore? Like, not at all.
Cheryl: 48:36
Wow.
Dr. Kaleb: 48:37
That was for me. That was for me. But that was huge for me, because, you know, I got a different bed, different pillows, different routine, definitely no caffeine after four o’clock. You know, really watch your alcohol consumption because alcohol affects your sleep quite a bit, too. But in the end, that was the biggest contributing factor for improving my sleep and overall health.
Cheryl: 49:02
It helps my mood so much, too. Sorry.
Dr. Kaleb: 49:05
Yeah. And then, the other thing for me, because I’ve got torn meniscus and OA in the knees over my life, and my feet have been reconstructed and all, I got that kind of stuff, getting good shoes and good orthotics, something I still am struggling with a little bit. But I’m also trying to postpone the replacement until I was in my 50s, so I guess I can start thinking about that.
Cheryl: 49:29
Oh, no, yeah, yeah. Understandable, yeah. We become shoe connoisseurs, for sure.
Dr. Kaleb: 49:36
Getting a good chair. I mean, depending on what you do, getting I have a wrist brace that I take with me, just in case I need it. Things start to get painful. Because once the pain starts, it usually is a sign of it’s really going to get bad soon. I sort of watch my weight. That’s also sort of, I know that everything is worse when you’re overweight, but also my body, my knees especially, tend to be very sensitive to how much weight I’m carrying. So, we’re carrying a heavy backpack. Like, I’ve had a little bit of back pain this week, and I’m like, wonder what happened? Like, oh yeah, I don’t need that heavy computer, right? Things like that, just sort of listening to yourself, like, what, where is it coming from, what’s working, what’s not?
Cheryl: 50:23
I really think that patients that live with these conditions after a while should have, like, an honorary occupational therapy degree, because you really do become, like, so well-versed in, you know, ergonomics, just through your own pain. Oh, we have the same mouse, I think.
Dr. Kaleb: 50:36
Same mouse, I love it. This is a Logitech, but it’s basically sideways, sort of. And I have an ergonomic split keyboard. That’s worked for a lot. I prefer if I had keyboards just hanging down by the side of my chair, but they don’t make these, not handy. I think also for me, I do a little latte cappuccino in the morning. And people are like, why are you mentioning this as part of your self-management? It’s like, it really is amazing what it does for my pain levels in the morning. And it’s, and I learned from neurologically that it’s better to get it two hours after you wake up, so your brain can wake you up first, so you don’t create a dependence on it. And then, I find that I’m really good for the day, and I occasionally I need something in the afternoon, early afternoon, for tea or something. But, yeah.
Cheryl: 51:31
I also think maybe just I, mentally, potentially, that that can be like you’re almost like a self-care, like, I’m having this delicious, you know, cappuccino. For me, at least. I’m a creature of routine, so.
Dr. Kaleb: 51:47
I never drank it until we had kids, though. So.
Cheryl: 51:49
Oh, I was so stubborn. I was like, I’m never gonna drink coffee. I know, never gonna be those people. And then, for me, it was grad school. In grad school, I was like, okay, I’m doing this. This has to happen.
Dr. Kaleb: 52:00
Grad school. You’re like, “Hey, we’re diagnosing you with some twitch. It’s related to caffeine and stress. You need to reduce your caffeine and stress.” I’m like, I got my dissertation in six weeks. What do I do?
Cheryl: 52:12
You’re like, no, maybe talk to me in six weeks. Yeah.
Dr. Kaleb: 52:16
Exactly, exactly.
Cheryl: 52:18
Okay, so for a rapid-fire, do you — rapid-fire questions — do you have any best words of wisdom for newly diagnosed patients?
Dr. Kaleb: 52:30
Talk with, I mean, get a good rheumatologist. I mean, they probably diagnose you, but make sure you’ve been diagnosed by a good rheumatologist. And find a good fit for you, hopefully nearby, if possible. And reach out. I get reached out by a lot of friends who have friends or family members who are recently diagnosed. And, you know, listen to others who’ve gone through it. Grain of salt.
You know, some things are going to apply, some things won’t. But be open, and be open to the idea that things will change, but they don’t always necessarily have to change dramatically. Because there’s horror stories that you hear about because those carry. But the ones that where people are doing pretty good, you may not hear about as much as well. And try to, if possible, attitude is everything, in my mind. Try to find some support and reasons to have a good, positive attitude, even if things feel horrible and bad.
Cheryl: 53:27
Yeah, yeah, a hundred percent. I was gonna say a thousand percent but I was like, I can’t say that. I’m talking to someone who does statistics. Do you have a favorite book or movie or show you’ve watched recently?
Dr. Kaleb: 53:43
Oh, I used to do a weekly movie night. Oh, oh, oh, there’s so many. I’ve been listening to a song on repeat quite a bit by Glass Animals called ‘Water’, ’cause it combines sort of my love of sci-fi with sort of synth pop, and that has been very catchy, and the kids have been enjoying it quite a bit, too. I was a big fan of Andor, the Star Wars show.
Cheryl: 54:22
Oh, my, I love that. So, good. Sorry. I shouted in the microphone.
Dr. Kaleb: 54:27
Can’t wait until Season Two, the final season, comes out. But I thought that was sort of, as a Star Wars fan, it’s just fantastic. So.
Cheryl: 54:35
And I didn’t even know all the lore of Star Wars. I just think the actor, the main actor in Andor, of course I’m forgetting his name. He’s so captivating. I’ll watch him in anything, like.
Dr. Kaleb: 54:44
Cassian. And then, I think, I mean, my favorite movie of the year, without a doubt, is Dune Part 2 in the IMAX if possible.
Cheryl: 54:53
A theme, yeah.
Dr. Kaleb: 54:55
And I still listen to a couple songs from the soundtrack to my kids, like, is this dude, like, before it cuts to the end to the credits, some of the sounds and the sort of Mediterranean, North African theme music that that Hans Zimmer brings into it, it just gets so emotional. It just, and the theme of that knowing that here’s somebody who’s not necessarily a good guy. He knows that what decision he’s making is going to be bad for a lot of people, but also feels like he’s obligated to do so. So, I really enjoyed all of that.
Cheryl: 55:32
So, so good. When you said you have a song in your head, I thought you’re going to say, Sabrina Carpenter ‘Espresso’.
Dr. Kaleb: 55:37
Don’t, don’t, don’t put it in my head! Don’t put it in my head.
Cheryl: 55:40
Sorry. Sorry. Her album’s really good, though. It came out last week.
Dr. Kaleb: 55:43
My daughter’s a Swiftie, so I get plenty of those things in there, too.
Cheryl: 55:46
You know that I went to both nights in Seattle, right?
Dr. Kaleb: 55:48
Oh, yeah. Oh, yeah.
Cheryl: 55:50
Yeah, okay. This is a new — this is why I didn’t tell you about beforehand. But just because I know that you love board games. Do you have a favorite board game, or is it too hard —?
Dr. Kaleb: 56:00
I do. Currently. It is Castles of Burgundy by Stefan Feld, he’s a German. They have a special edition version of this, and it’s just so beautiful. The components are so nice. It’s such a good thinking board game, and it just passed Terraforming Mars is my now, my new favorite, but it used to be Terraforming Mars.
Cheryl: 56:20
Okay, Terraforming Mars is on my list. I don’t have it, but awesome. I love it. That’s so great. Do you know the game, Ascension?
Dr. Kaleb: 56:30
Oh, yeah, the card game.
Cheryl: 56:31
The card game, yeah.
Dr. Kaleb: 56:33
Yeah, I play it every day. There’s two friends on my iPad that’s —
Cheryl: 56:38
Oh, you have — that’s so funny. That’s what we did on the air — our family went to Japan this summer, and we played it on the airplane.
Dr. Kaleb: 56:42
My kids are constantly like, oh, you, this person’s winning. I’m like, ah, don’t be so sure.
Cheryl: 56:48
Yeah. No, you never know till the end. Okay. So, last one. This is a hard one, but what does it mean to you to live a good life and thrive with rheumatic disease?
Dr. Kaleb: 57:05
I’ll tell you what it doesn’t mean. It doesn’t mean you don’t suffer. It doesn’t mean you won’t have horrible days. It doesn’t mean everything’s going to be great. But in my mind, for me, I’ve made a decision many years ago that I’m going to live a life of purpose, and my purpose is to help make those peoples around, make their lives better, people with these diseases, their lives better. And I get up every morning knowing that this is part of my purpose. And that I want to say, you know, in a few years or something happens to me and I’m gone that Kaleb Michaud helped rheumatology, helped people, patients with these diseases, get better and learn more and do better. And then, you know, the other side of it is, I want to make sure that people are finding board games and finding things that they can be passionate about, whatever it might be, to enjoy those days that we do have.
Cheryl: 58:03
Wow, that is gentle arthritis-friendly claps. I’m giving you gentle arthritis claps. That was my claps.
Dr. Kaleb: 58:11
I could never snap. I could never snap. I had a clap instead.
Cheryl: 58:15
Oh, I know. I’m barely functionally able to snap. No, that was beautiful. Yeah, wow. I’m gonna let just, I’m just gonna leave it there. Let that percolate. Where can people find you online?
Dr. Kaleb: 58:29
I’m on X at @Dr_K. I was an early adopter, and on LinkedIn, and then forwarddatabank.org and forwarddatabank.com. And then, you can find my name on list of lots of places, too.
Cheryl: 58:44
Yes. And for those who maybe don’t, aren’t in the know, X is the new name of Twitter, formerly Twitter. And there’s a lot of, I’ve noticed, a lot of researcher and academic kind of engagement there, patients as well. But the patient community I’ve connected with more frequently is on like Instagram, but I don’t think you have an Instagram, but.
Dr. Kaleb: 59:06
Yeah, I run a board game cafe on Instagram, and that sort of separates the two from it.
Cheryl: 59:12
Yeah, that’s a good idea. That’s why, have a separation between work and life. I don’t do that myself, but I recommend it for others. Well, thank you so much again. We have more to talk about in the future, I’m sure, and it’s been just totally a pleasure chatting.
Dr. Kaleb: 59:29
Truly a pleasure. Yes, Cheryl. Thank you, and I look forward to chatting again sometime in the future.
Cheryl: 59:34
Yes, you too. Okay, bye-bye, for now.
Dr. Kaleb: 59:38
Have a great weekend.
Cheryl: 59:39
You too.
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