On episode 18 of the Arthritis Life podcast, Jason shares his hard win wisdom and insight after living with juvenile idiopathic arthritis and ankylosing spondylitis for almost four decades. He shares his best tips for daily life, coping with stressors, unique challenges of single fatherhood with chronic illness, and more in this heartfelt episode.
Jason Webb is a 42 year old father of 3 daughters who has lived with inflammatory arthritis for 38 years. He’s also an artist, chef-educator (27 years), stock trading coach, and mentor to other single fathers.
Jason is a creative with a flair for wit and humor. He understands that what works for him might not work for you, but he’s there to help you through, so don’t be shy to reach out. He is currently working on a culinary education program and children’s book series.
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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.
- Links to things discussed in the podcast episode:
- Jason’s website: Chefscookies.ca
- Jason’s Instagram:
- Instagram.com/thejazzyjay
- Instagram.com/jazzycharts
- Instagram.com/chefs_cookies
- Instagram.com/jazzyjayfood
- Jason’s Facebook accounts:
- www.facebook.com/TheJazzyJay
- FB @jazzycharts
- Fb: @chefscookies
- Free Handout: Cheryl’s Master Checklist for Managing RA
- Cheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support
- This episode is brought to you by the Rheumatoid Arthritis Roadmap, an intensive online education and support program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.
- Medical disclaimer: All content found on the 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.
Here’s the show breakdown:
- 1:09- Jason’s diagnosis story (also known as a journey or saga): from juvenile idiopathic arthritis to ankylosing spondylitis.
- 6:00 – How Jason copes with gray areas and identify his flare triggers.
- 8:40 – How Jason manages his physical health at this time.
- 11:18 – What helps Jason manage Ankylosing Spondylitis: staying “safe, smart, strong, sweet and silly,” plus adaptive aids, massage, knowing his flare cycles, knowing diet and food triggers and more.
- 16:30 – Coping mechanisms for chronic illness and chronic pain
- 19:25 – Cheryl once again brings up Acceptance and Commitment Therapy – ACT
- 21:30 – How Jason’s challenging upbringing taught him how to be adaptable.
- 23:45 – How Jason learned the importance of self-education.
- 26:00 – Jason’s reflections on the positives and challenges of parenting with a chronic illness.
- 29:30 – Jason’s past experiences as a chef & how he experienced cycles of stress, physical challenge and financial challenges as a single father.
- 32:30 – Jason’s experience mentoring other single dads on Facebook
- 32:30 – Jason reads his letter to single dads and others who are struggling.
- 37:00 – Jason’s advice for newly diagnosed patients: educate yourself about the disease, listen to your body
- 39:00 – Jason reflects on the connection between his emotional state and physical symptoms, how stress has caused flare-ups for him.
- 42:00 – Jason & Cheryl’s parenting and stress-management advice
Full Transcript:
[00:00:00] Cheryl:
[Introductory note]
Hi there! I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program.
I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more. You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis.
You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness. No topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
Okay, so welcome Jason. I’m so excited to have you here on the Arthritis Life podcast today. Can you tell us a little bit about yourself, just to start off?
[00:02:49] Jason:
For sure Cheryl, thanks for having me. It’s really exciting to be here. I’m loving everything you do and the work, so thank you for inviting me. I’m 42. I’m from Montreal, Quebec. I have three daughters, a 20-year-old, a 3-year-old, and a 1-year-old. The joys of my life. I was a chef for 27 years. I, because of the arthritis, I’ve had to take a break on that. So, more recently I’ve been learning to trade stocks. I actually coach beginner stock trading course. I make cookies in my spare time. And I find that the work-life balance is essentially important. So, I do a little small projects to be able to manage that best. Which brings me to another project is a children’s book I’m working on to help improve culinary education for youth and beginner cooks.
[00:03:41] Cheryl:
Oh, that’s amazing. That’s amazing. And can you tell the audience a little bit about your relationship to arthritis or juvenile idiopathic arthritis? When did you get diagnosed?
[00:03:53] Jason:
For sure. My saga would be that when I was four-years-old, my parents realized that I couldn’t walk more than two blocks without crying to be carried. And then, by Grade Two, at that time, they didn’t know what it was. This was 1982. They put my legs in casts. There was problems with my feet, blah, blah. Didn’t fix the problem. When I was in Grade Two, I remember the day, I’ll never forget it, my teacher said that she was calling. My mom was coming in after school. And I was like, what did I do? What did I do? She like, no, everything’s fine. And she came in, and the teacher had noticed that when she spoke to me or called me, I turned my whole body.
[00:04:34] Cheryl:
Oh, yeah.
[00:04:34] Jason:
And that’s when they brought me in. But by then it had gone from my feet all the way up to my spine, to which now I have fusion in C3 and C4, I think, somewhere around there. But then, so they diagnosed with juvenile rheumatoid arthritis which is now J, I believe.
[00:04:52] Cheryl:
Juvenile idiopathic. They changed the rheumatoid to idiopathic. Yeah.
[00:04:56] Jason:
I went to Alberta in 2000. I lived in Alberta for a few years there. I had a doctor who told me — it’s been quite an interesting saga, so I’m really looking forward to discussing a lot of things with you. The doctor said that it was possibly congenital Lyme disease. Yeah. So, you’re born with Lyme disease. It comes out as a cold. This is what I was told. And I had looked it up, so there’s some truth to this. And you think it’s a cold or whatever, and you don’t check, and all of a sudden you have, it’s like a rheumatic cold kind of thing, you have rheumatism and there it is. Who knows? Later on in life, once I was back here, I had continued seeing the doctor, the rheumatologist I’d seen before. He gave me a more recent diagnosis of ankylosing spondylitis.
[00:05:46] Cheryl:
And that tends to affect the spine a lot more than like rheumatoid or idiopathic juvenile idiopathic. So, that does make sense.
[00:05:54] Jason:
Yeah. Now, full circle. More recently I’ve been seeing a, sports massage therapist. Can I give a little shout out?
[00:06:02] Cheryl:
Sure, of course. Thanks for asking.
[00:06:04] Jason:
Okay. Jade Salter, S-A-L-T-E-R, out of Montreal. Changed my life. She’s unbelievable. She’s a sports massage therapist, so you’re not going there to relax, that’s for sure. But she taught me that my right leg, the muscles on the right side of my leg, if you call it — I’m not sure what muscle it is, closer to the ankle — is underdeveloped. Hence why I have certain issues with my feet. And then, it works its way, obviously counterbalances itself all the way up. She has found spots that have released tension. And my shoulders for those who are seeing video are relatively symmetrical. Before I started seeing her, my left shoulder was about five inches higher. Even if I go see her sometimes, it’s like this. And then, when I’m done it’s wonderful what she’s done. Anyway. Shout out to Jade. She’s beautiful and great. But that was another thing that kind of just brought me back to my childhood diagnosis of that feet issues, and it made me realize that maybe, there’s a lot more to it than just arthritis.
[00:07:15] Cheryl:
Yeah, absolutely. So, it sounds like you had a lot of gray areas since you were, in your journey, since you were little. It wasn’t clear exactly what is it, and then you get one diagnosis and then it turns out it’s changed. And that is something that a lot of people end up having to cope with rheumatic diseases. They’re famous for being difficult and tricky to diagnose. And so, I’m just curious how that over time has affected your emotional health? Just the gray areas and the unknowns, in addition to maybe just obviously the pain and the symptoms themselves. I don’t wanna jump too far ahead. But I know that’s something that you’re passionate about.
[00:07:59] Jason:
Yeah. It’s been — I don’t know a life without it, right. So, there’s not — so it makes it a little bit easier, I guess? I don’t know, than people, like my aunt called me, she’s 70, she’s getting arthritis, and she’s like, “Oh, my God, if I knew this pain that you’re going through with a child, I would’ve done things differently.” And I appreciate that compassion very much. But that’s been a big highlight in my life, is I remember particularly when I was a child, I was gonna doctors every week for my gold injections and blood tests and all that stuff. Yeah, way back. And, physiotherapy was wonderful, but sometimes I realized that as I got older — I realized that when I was younger I knew it — but especially as I got older, that the weather would give me a flare.
[00:08:54] Cheryl:
Oh, yeah.
[00:08:55] Jason:
And I didn’t do exercise. I was a kid. I didn’t have a supportive — I come from a very interesting family history. So, I didn’t have a supportive — people were like, “Go do your exercises.” I’m a 6-year-old kid, I don’t wanna do exercises. So, anyways, the point was I’d go to physio and she’d be like, “You’re not doing your exercises?” I’m like, no, it’s, the weather, always happens like this. And then, the next week, weather would be better, I’d see her and she’s like, “See, when you do your exercises, you’re so much looser.” And I’m like —?
[00:09:31] Cheryl:
Oh, that’s actually a great lesson because I know I have a lot of occupational therapists who listen as well. And physical, in the US we call ’em physical therapists, not physiotherapists, but separate from occupational therapists. But it’s so common for them to not really have an understanding. The healthcare professionals in rehab sometimes don’t have an understanding of like the patient’s actual home life, right? And what influences their ability to actually do those exercises and the other factors that are in play. So, yeah, I think that’s a great lesson. Like, you can’t just give a six-year-old an exercise program and then get mad at them when they don’t do it.
[00:10:08] Jason:
But it’s the combination and, excuse the word, but the ignorance of the other possibilities that really has affected my care. I have a great rheumatologist. I had a great rheumatologist here in Montreal and I stopped seeing him more recently. I completely unfollowed because it’s been 38 years now. I know what’s coming. I know how to deal with it. I know the possible side effects of medications. I know that in six months I’m gonna have to take a stronger version of the medication or the new one that has the side effects that go through your gut or whatnot. That you need to take another pill, which means you need to get your eyes checked every six months.
And I was like, it’s a cycle. I’d rather just, I, like I said, I’ve been born this way, right. So, I pretty much, I’d rather deal with the pain every now and then than take the chance of my biologics, for example, which may lower my immune system. When my daughter’s daycare got gastro, I would get gastro. She wouldn’t even need to get gastro, I would get it. I was so susceptible to the viruses and things like that. The opportunity and the risk for me was like, I’d rather deal with the pain and managing that than take that chance.
[00:11:25] Cheryl:
That’s interesting. Yeah. Each patient has the freedom to make the choice. ‘Cause like for me, the risk benefit analysis is different. I’m very comfortable taking — I’ve been on biologics for 18 years. And that’s the risk benefit that works in my life. But in your — everyone, I think, is free to make the best informed decision for them. It’s the professionals can forget that sometimes.
[00:11:50] Jason:
And it might be unfortunate due to just like my history with it that I’m pushing it away. It might be the greatest thing for me, and I’m sure it is. However, my point of this was that when I went into his office, he has a book on his coffee table about arthritis and nutrition that he wrote with another doctor, right? Yeah. And I was like, oh, that’s crazy. So, I went in and talked to him. I said, this and this, and I don’t feel with biologics, and nutrition. He says, “It’s not gonna help you.” I’m like, what? It is. “It’s not what you need. This is what you need.” And I’m like, no, that’s not what I need. What I need is for you to say, yeah, sure. That’s a great idea here. This is what I know. Here’s the book I wrote. Here, 25 bucks for the book, doctor. Plus, I may be more inclined to listen to your advice.
[00:12:37] Cheryl:
Interesting. So, did he explain why? Like, did he mean that, I wonder if he meant that because people who’ve had it for a long time may not be as responsive to nutrition as —
[00:12:48] Jason:
Pretty much. Yeah. Pretty much. I feel I know my cycles. I know what flares me and that’s really been the best — I do know it’s gonna be a condition that worsen our time. And I can only pray that it does well.
[00:13:06] Cheryl:
What are some of the things you found that have helped you manage your ankylosing spondylitis on a daily basis now?
[00:13:15] Jason:
Laughter.
[00:13:16] Cheryl:
Yeah.
[00:13:17] Jason:
Number one, man. Number one. Yeah.
[00:13:19] Cheryl:
Yeah.
[00:13:20] Jason:
Smile and laugh. I have taught my daughter, my 20-year-old since she was a kid, to stay safe, smart, strong, sweet and silly.
[00:13:34] Cheryl:
Ha! I like the silly part.
[00:13:36] Jason:
Yeah, everyone does. Especially the three-year-old. The three-year-old, she doesn’t even say the other four, but when she says silly, she loves being silly. And as a dad, I gotta reinforce the safe and smart come first. And then, strong and sweet, and then you can be silly all you want. And I find that’s really what’s been able to help me get through it, is that I have to be safe. I use a cane when I need to. I put on my braces when I feel the flares coming on, than when I load up on the anti-inflammatories I don’t need to take. And they’re gonna rip a hole through my gut, so I’m gonna feel it coming on.
I know it’s a three-day cycle. I know there’s no point of getting cortisone shots because if they take three days to take effect, really? And mine’s gone by then, you know? I just, I found what works for me. I have a giant heating pad, which is fantastic. A little massage machine and all this stuff, and my Epsom salts, and yeah. Like, number one, acupuncture’s been great. Phenomenal. Feel like acupuncture was one of those that changed my life too, for sure.
[00:14:43] Cheryl:
Great.
[00:14:44] Jason:
And I think that Jade, I mentioned earlier, like really hits those points. Like, she’s really all about the holistic kind of, it’s not just massage. There’s a lot of active release techniques and stuff like that. So, diet, another one. I’m a huge Coca-Cola fan. When I was a kid, I drank coke all the time. When I started drinking alcohol, it was rum and coke. And I had crazy flares and I thought it to do with alcohol. And I read somewhere that carbonation increases your chance of getting osteoporosis, and it removes the calcium from your bones, and it just clicked. So, I know now that if I have a Coke, I’m gonna hurt tomorrow. Chances are like 85%, I’ve swollen up, you know? I will drink Coke from time to time, but I don’t, I’m not buying cases like I did when I was 18, that’s for sure.
[00:15:33] Cheryl:
And I think nutrition is such a hot topic that people are always curious about. So, I think that you’ve touched on is there’s a difference between what are the things in my diet or nutrition that trigger a flare up — so, like the bad foods — versus what are the foods that help me? So, it sounds like you have a certain amount of foods that you know are like triggers for inflammation. And is there like a name for the kind of some people follow the autoimmune protocol and some do a vegan —?
[00:16:01] Jason:
I call it the bear diet.
[00:16:03] Cheryl:
Okay.
[00:16:03] Jason:
Yeah. Fish, nuts, fruits, berries.
[00:16:07] Cheryl:
Oh, eat what a bear eats. So, I was like, what does it stand for? I thought was like B-E-A-R?
[00:16:11] Jason:
Yeah. What a bear eats. Eat a bear. The salmon, the berries, you know?
[00:16:17] Cheryl:
I could survive on that. Yeah. Yeah.
[00:16:20] Jason:
Protein and vegetables.
[00:16:21] Cheryl:
When you were chef, was it kind of an eclectic style or were you like —? If you were, I was just imagining if you were like an Italian food chef that was like specializing in pasta. And now, you have to eat the kind of lower carb. That would be a hard transition, but —
[00:16:37] Jason:
Well, I’ve done many styles. My whole life, I was a sous chef at an Italian place. I’ve worked at steak places, a lot of corporate places, nothing vegetarian or anything like that. But I decide what I get to eat. Like, diet, I’m not the strongest on following suit with that, but I do try and make the best choices. As a chef that I could just take a metal bowl, put some salad in it, grill off a piece of salmon or chicken, throw it in. I don’t like red meats a lot, even though I probably eat a lot more iron. I do get it from cherry juice. Pure cherry juice is great for iron. But that’s pretty much it. I’ve been able to make my own choices when it comes to what I ingest and how I eat and everything. I have not been the best, that’s for sure. I could definitely choose a lot better, and I try to, I don’t buy the white bread anymore. Sometimes for my daughters, for grilled cheese or whatnot, but.
[00:17:35] Cheryl:
Well, it comes back to this idea of trade-offs, right? So, you’re trying to overall have, try to have a good quality of life. So, that means, yeah, that means that you’re not gonna be like, or for a lot of people it means finding a balance. If a cookie brings you happiness and joy and it’s not the most by the book healthy thing, but one cookie one day, or one of your favorite desserts or sweets or coffee, that might be a worthwhile trade off. We’re always making trade offs, aren’t we, right?
[00:18:07] Jason:
Exactly. But that’s exactly it. Being kind to yourself. Man, it’s hard enough as it is with all the pain, not knowing whether it’s gonna be like in five minutes. I’ve been going at this for 38 years, and it’s gotten to the point where it’s been really rough. And I’m sure a lot of your listeners, the patients at least, can definitely relate to the fact that we all know there’s only one time when the pain’s gonna end, and that’s really rough sometimes. So, that balance and being kind to yourself. Self-compassion is very important. It seems selfish, but if you can’t take care yourself, you can’t help your friends and family either, so.
[00:18:52] Cheryl:
Absolutely. Yeah. Did you learn about self-compassion through a book or therapy, or did you just learn it on your own?
[00:19:01] Jason:
A lot of my education is self-educated. I read a lot of books. I was a life coach for a bit. I do the stock trading coaching now. It’s all about the cognitive behavioral therapies, and neurolinguistic programming, talking to yourself, not allowing those negative voices to enter and become your voice. I’m very spiritual. I grew up in a religious household, very Catholic mom, Anglican father. Spirituality has really helped me when it comes to separating the mind, body, and spirit.
[00:19:39] Cheryl:
Okay, yeah.
[00:19:40] Jason:
Because my body is hurting does not mean that my spirit is dead, you know. My mind is my — and it’s a big combination, right? Your body hurts. Your mind goes nuts because you’re in so much pain. You have those thoughts or whatever. And your spirit is down. It’s, a hard cycle to break. The only choice we have is to smile. That’s really the only way we can break that is to laugh about it or find that way to break that cycle and to realize the separation, the individuality of it, you know. There is something, I believe it’s a Buddhist teaching. I might be wrong on this. I’m sure viewers might let me know. But it was, it’s rain. R-A-I-N.
[00:20:29] Cheryl:
Yes. The Rain of Self-Compassion by Tara Brock, I believe. Is that her?
[00:20:33] Jason:
I’m not sure.
[00:20:34] Cheryl:
Yeah. No, I love that.
[00:20:35] Jason:
But it stands for Realize, Accept, Investigate, and Not Identify. And you realize you’re in pain. You realize that what it does to your mind. Accept it. Investigate why. Oh, I drank that coke yesterday. And then, take yourself out of it and realize that you, who you are is, or I am, is not that pain. Yeah. And it’s hard. It’s like a Chinese water torture and arthritis.
[00:21:08] Cheryl:
Well, yeah. This is — sorry. Every single episode, I think about Acceptance and Commitment Therapy, which is like adjacent there. Some people consider it as that it’s like Cognitive Behavior Therapy in a little bit of ways, but it’s very different in other ways. So, it’s like Cognitive Behavior Therapy and that you identify that what you’re having is a thought. If you notice it, I’m noticing I’m having a thought, and the Cognitive Behavior Therapy also has that. But instead of examining whether that thought is a distortion or not, you just allow it and you accept it.
Again, it doesn’t mean that you have to like it, but it means that you just allow it to be there and you allow yourself to connect to the present moment. And then, you take action on what’s meaningful to you despite that, you know. So, you don’t — oh, yeah. One of the tenets of ACT, Acceptance and Commitment Therapy is that you defuse from your thoughts, meaning you detach from them. So, you know that this is not, it’s just a thought I’m having about my pain. That it’s not necessarily a reality, it’s just a little, like, literally phenomenon in my brain, linguistic phenomenon.
[00:22:14] Jason:
Bingo. That’s it. Yeah. A linguistic phenomenon. That’s exactly it. It’s any kind of emotional thing, whether it be happy, sad, grief, et cetera, et cetera. We’ve felt it before. And we got through it.
[00:22:28] Cheryl:
You’ve chosen a path around managing at this point after 38 years that sounds like you have adjusted and adapted to what is going on. Like, it doesn’t sound like you’re fighting it. Like, I have to make this go away. Like, there is a thread of acceptance in my mind in what you’re saying, but correct me if I’m wrong.
[00:22:49] Jason:
No, you’re right. Peoples is peoples, right. As they say in the state of Manhattan. My dad was a very wonderful, strong, hardheaded man, just like me. “It is what it is,” was one of his answers. And I couldn’t stand it. Because I was a curious kid, very curious, very creative, imaginative kid, wanted answers to know why. And my mother was manic depressive schizophrenic. I grew up in a lot of social systems and some foster care and stuff. My parents around — my dad took care of me as much as he could. But there’s a lot of time when we were, me and my sister, were in different cares and stuff, and different people. So, the consistency of that was very difficult for me too. However, it did teach me exactly that. Adapt. Because I’d learn pretty quick what made people happy, what made people sad, what upset them, and what to do, what not to do. And it was, I had 10 families between the age of 4 and 12.
[00:23:50] Cheryl:
Oh, my goodness. I’m really curious about that because I was, I wanted to make sure I didn’t skim over your childhood in general with just growing up with, at the time, it was thought to be juvenile rheumatoid arthritis. So, then you, ’cause it’s already so hard for so many families to just keep track of the medical appointments and such. So, I’m just —
[00:24:12] Jason:
Oh, mine was every Friday. So, every Friday I knew what it was. Yeah. So, and I usually, I, at one point, like I was going by myself. I was nine-years-old taking the bus up to the hospital by myself. Like, it was one bus, two from my house to the hospital, you know. I knew exactly where I was going, stuff like that. I was tall as well, so. Like, 13.
[00:24:32] Cheryl:
Yeah. But that’s, do you think you maybe grew up a little faster than most kids your age?
[00:24:39] Jason:
I don’t. I don’t. I don’t compare myself. I don’t.
[00:24:42] Cheryl:
That’s pretty smart.
[00:24:44] Jason:
I like to say I grew up differently. Well, I, people’s is peoples man. I just, because — and that’s why arthritis is the number one thing. It’s taught me just because I don’t see what’s going on with you or what’s happened to you doesn’t mean that nothing happened, you know? Someone with the rich, comfortable life, I’ve never had an extra penny my whole life, and I don’t know if I ever will have an extra penny. But those rich kids have other issues, for example, people without physical issues have other issues. Be careful what you wish for. Always thought about a trade off, you know? Something like that, right. Wouldn’t mind getting a kidney replaced, take away all the pain forever. I’ll deal with it.
Yeah. So, yeah, it’s a very, it’s a very difficult, balance. And to summarize all of this is educate yourself and don’t follow anyone blindly. Yes, my doctor probably did have the best option for me to take the biologics at my age, with my stage, and my state, and all that. Absolutely. The researches that I’ve done and my life, experiences has made me decide what I’ve decided to do. However, I’m happy.
[00:26:12] Cheryl:
Chronic illness patients, whether it’s from an inflammatory arthritis disease or whether it’s from diabetes or something else, if you’re going to have something the rest of your life, you will absolutely benefit from doing the most research you can to figure out, ’cause you’re the one that’s with you 24/7. Not doctors, it’s you. So, being an active self-manager is one of the ways that we call it in the healthcare system. Patients self-manage their care on a daily basis. And so.
[00:26:44] Jason:
Yeah, on a micro level, yeah.
[00:26:46] Cheryl:
Yeah, exactly. And you’re in charge of all those.
[00:26:48] Jason:
Like, and macro, really.
[00:26:49] Cheryl:
Yeah. That’s why I find so fascinating. It’s the intersection between the micro and the macro.
[Intermission begins]
Hi, everyone. I’m interrupting really quickly to remind you that this podcast is brought to you by the Rheumatoid Arthritis Roadmap. It’s a comprehensive online education and support program that I created from scratch to help people learn how to live a full life despite rheumatoid arthritis. In the course, you get to learn how to manage everything from physical symptoms like pain and fatigue, to social and emotional aspects of living with rheumatoid arthritis. I even cover the logistics of things like how to track symptoms and how to advocate for yourself in medical appointments. To learn more, go to myarthritislife.net.
[Intermission ends]
I am thinking one thing that people might be really curious about in your particular context, like today, having two small children, how has your condition affected your parenting experience? Is it hard to do certain things, or is it, have you been able to adapt?
[00:27:52] Jason:
Parenting makes me the happiest. I love it because my girls, if it wasn’t for my girls, I would not be in the shape I am right now. I would not. I have a body right now that I’ve never had. And it’s because I play with my kids. It’s ’cause I pick up the 40-pound in one arm and the 25-pound in the other. And I do as much as I can when I can. And that’s the trick. You gotta be really be kind to yourself and you gotta lay on that couch for the day. And we know that as unchargeables, or spoons, we’re gonna have the energy to do as much as we can the next day. And that goes with every activity, not just parenting.
But I would think, and my girls has saved me from a lot of those negative, emotions. They’re my heart and soul. I find that my favorite, especially since I have the 1- and the 3-year-old. I can, I lie on the floor for 15-minutes and they jump all over me and they think it’s hilarious. And I’ve taught my 3-year-old and the 1-year-old, they’re already, she’s already doing it. I taught ’em how to pounce. By the time they’re like six months, they can get up on their knees. They knew how to pounce. There’s ways around it. I take walks all the time. I go to the park with them. Let them do a lot of the playing, but just that extra walk is great. The kids have helped me be more active. If they weren’t, if I didn’t have the kids, I wouldn’t be as active as they have been. And I definitely, I don’t, I have a much better body in high school. It’s a challenge. It’s difficult. And the harder parts is that emotionally I worry a lot about when I’m going to go outside in the winter and slip on the ice while I’m walking my kids to the store and take out my hip. it’s helped me with gratitude and positivity.
[00:30:00] Cheryl:
And children live in the present, right? In one of my textbooks, I have this beautifully poetic sentence in the middle of the rest of the very unpoetic sentences that was like, “Children live in a perpetual present,” which I’ve always stuck with me that they only know the present. A 1- and a 3-year-old. They’re not ruminating about the future. They’re not saying, “But what about yesterday? You didn’t do that or you couldn’t do that,” or, “What if you cannot do, what if you can’t do it tomorrow?” They’re just living in this perpetual. Yeah.
[00:30:31] Jason:
That’s it. They don’t understand the concept of time and whatnot.
[00:30:34] Cheryl:
And when I asked you the question, I realized I almost was like, biased towards thinking of talking about the negatives or the difficulties of parenting with a chronic illness. And so, I was moved by the first thing in your response was the positives. It’s brought to you, being a father has brought so many positive things to your life, despite all of the challenges you already have with living with so much pain.
[00:31:00] Jason:
It’s given me the drive. It’s been very — I think it’s the external things that really affect. My parenting, the stress, the physical emotional cycle that has affected my work. I was a chef for a long time and I pushed myself way too hard. I’ve worked at very high-volume hotels like Chateau Lake Louise, fine dining restaurants. I was a cook at the Kitchenelle in Montreal. Places like Planet Hollywood, Montreal. I was on the opening team as a beginning cook, and I quickly became a trainer. I pushed, yeah, I pushed myself to manage up to 25 staff and serve up to 2000, 3000 people in a couple of hours. And it’s something that I’m very proud of. I was telling you earlier, I’ve been able to cook for celebrities like Cindy Crawford; I met Wayne Gretzky, James Brown.
[00:31:55] Cheryl:
Whoa!
[00:31:56] Jason:
It’s been a wonderful life, but the physical ruin it has done on my body, I’ve recently had to slow down. I had a hernia one day at work is what happened. It wasn’t even arthritis-related. And that put me off work for about a month and a half. And, by the time I was back I was just like done with the — once that happened, I was like, okay, my body — it’s time to maybe slow down. So, trying to find this more balance of things. Okay, so this is my cycle. So, I work, I get stress, it causes physical stress. I can’t walk to work tomorrow. I lose money. I lose so much money that it doesn’t make sense for me to even work to a degree full-time. Because I miss so many days that unemployment pays me just as much. Okay. Right. So, that’s one.
Second is because I’m not in the relationship. I have child support for three children. Now myself, I have very low income. Which leaves me very little to work with or survive on, right. So, there’s been a very difficult balance, a difficult time managing that cycle. The arthritis, the young child, the child at a young age. And now these two as well. I really wanted that family. It’s a very precarious, difficult situation when you have any sort of disability and children that you need to be able to take care of but can’t. It’s just been, it’s quite interesting. And I’d love to hear from some single fathers with arthritis. I actually mentor fathers through Facebook’s mentoring program. Have you seen this?
[00:34:03] Cheryl:
Oh, no. That’s great. I’ll put a link to that in the show notes.
[00:34:06] Jason:
It’s, yeah, so I’m in some single dad groups. And I don’t know how it happened, but it was like, oh, if you’d like a mentoring program, what you do is you, I think each group has an individual option to have that. You put in your story, your name, your story, what you offer, and then if people feel inclined to, they message you and say, “Hey, I’m going through this. Thanks for being there,” kind of thing. And then, I’ve been able to give my input and my feedback and it’s helped me a lot to be able to be there for these other men who are going through what I’m going through. They’ve given me such validation.
Something that actually, I pulled it up ’cause I’d like to read this, I wrote it for dads, and single fathers and all this stuff. But honestly, in this case, you could change this to — you’ll get the point. Thanks to dad groups. Thanks to dad groups on Facebook, I’ve had the pleasure of using its mentoring application to be a mentor for men whom are stronger than they believe. Again, general. Men, women, please adjust. Thank you. I don’t need the emails. I posted my life story and that I have an open DM to talk anytime. I’ve been contacted by six men. Seven now, actually. All single fathers at different steps in life. Some going through exactly what I am right now, a custody battle or a discussion as I think it should be called. Some of their daughters are leaving for university and will be away for the first time and they’re asking me, “How many messages do I send before it’s too many?” All of them grown men wanting to rip their hearts out to soothe the pain. And I think side note, we all with arthritis can understand how we wanna stop the pain some days. They’ve each helped me grow immensely. And I’ll not tag you, but I hope you all see this much love to you. You’ve got this.
Compassion is our world’s largest deficit. We need more for everyone. We all have to stay strong and realize we’re all just children with life experience. Children need to be loved, protected, cherished, supported, and have a lot of time for play. Anyone who’s been around children can affirm that children can get very angry, sad, needy, pushy, millennial-ish, boomer-ish. Live as if you’re speaking to children, caring for a child, loving a child, and wanting the best for them. And yes, when needed, put them in a timeout from your life for everyone’s sanity. Stay safe, smart, strong, sweet, and silly. If you got here, thanks for reading this.
[00:36:44] Cheryl:
Yeah, that’s amazing. That’s, thank you. I love it. Adults are children with just more life experience.
[00:36:51] Jason:
That’s all we are, and we forget about it. We all get so bogged down with the adult life and when all we wanna do is sit there and, I don’t know, play with your doll, do your nails, draw a picture because we loved doing it when we were a kid. Like, whenever you’re stressed or anxious, just do something you like doing when you were a kid. Get up and go to the store and buy some yarn and make a friendship bracelet.
I can’t remember which book it is. I don’t think it’s the Four Agreements, but it starts off talking about imagining a planet where every time something happens to you, you’re covered in a sore and your body’s covered in sores and you can’t touch each other. Yeah. So, when we go and approach someone, we’re like, “Ah, you’re gonna hurt me.” And usually those scars or whatever happened when we were a kid, point being that if we realize that everybody’s got those arthritis, again, like I mentioned earlier, invisible issues. Whether it be something that causes physical pain or emotional pain, everyone’s got something that we need to just be a little bit kinder and accepting. Realize that those people are going through what they’re going through. ‘Cause that’s the way they were born. They were raised. They were — life experience brought them to this. Peoples is peoples. I think it’s just really important that it’s not hard to be kind within our freedom of speech to be able to help raise up the whole world.
[00:38:23] Cheryl:
I love it. Oh, my gosh. Did you — was there anything else you wanted to say specifically for newly diagnosed patients? ‘Cause that’s the population that I end up finding myself gravitating towards and reaching out to and just wanting to get on a soapbox for.
[00:38:39] Jason:
Yeah. Basically. Well, we’ve covered it all. That I had noted about that was self-educate yourself. Yeah, self-educate yourself. Listen to your doctors. Find the ones that you trust and you feel comfortable with. Try the medications. Make sure you’re listen to your body. Your body will tell you. My roommate had a heart attack not too long ago. He is 42. I love him to bits. I’ve known him since I was a child, and he said it too. Ever since then, he listens to his body. When he needs to sleep, he sleeps. Yeah, there’s an expression you don’t get it until you get it, right, with arthritis. So, sometimes compassion for them, but don’t lose yourself in it.
A quick story. On a side note, you can edit this, put this somewhere else. The mental, emotional connection and the importance of that. I was in a relationship with someone who’s very non-supportive to my needs. I was one point, I woke up and I couldn’t walk, on one leg. It turns out that it was not arthritis related. It was a pinched nerve. But I couldn’t walk. And yeah, I was told, “I can’t help you get to the hospital ’cause I have to get to work now.” The hospital — not only was getting the hospital difficult when you only got one leg, but it was five minutes down the road and on the bus route to work. So, that was that. My point is not too long after that situation, we decided to separate. And I will tell you, emotional, physical connection, and I’m saying the same thing there, but it’s redundant. As soon as we decided to separate, I went into another room and I had a flare up. Sorry. Fast forward. I had a flare up and we decided to separate, okay? Within five minutes, that flare was gone.
[00:40:45] Cheryl:
Wow.
[00:40:46] Jason:
I’m not even kidding. And three days, four days later, we said, okay, maybe we can work this out. Let’s try again. It came back. This experience — and I’m 38 years, I’ve never realized or recognized something so specific to my emotional, physical connection. That really, really screamed to me that mental and physical connection are huge and we gotta keep the smiles.
[00:41:17] Cheryl:
Our stress levels affect our body and vice versa. That there just is this profound connection and yeah, you’ve lived it.
[00:41:25] Jason:
More than I expected. Like, I know that — so, I’ve known now that when I get, well, first of all, my body is stiff, right? So, I’m already stiff. We add stress on top of that. Now we get tension, just in general from a day at work, right? So, sometimes when those flares are happening — and a big part, you know the difference between eastern, western medicine, all that jazz, taking out, beating out the symptoms rather than the root, that holistic view of what is happening in your life at the time. Not just, I have a swelling. That RAIN, right? Realize, accept that, investigate. Investigate why is it happening? Not just, oh, I have arthritis. No, it’s not. Yes, you have arthritis and that’s what happens when you stress. Why are you stressed?
[00:42:17] Cheryl:
Yeah. Yeah.
[00:42:18] Jason:
What is it that’s stressing your body? Is it ’cause you drank the coke yesterday? No Cokes. Okay. What else is going on? Oh, you had a bad day at work. That’s probably it. Take a nice hot bath. Chill out. That doesn’t help? Take the anti-inflammatories. Or taking anti-inflammatories first because, you know, take care of that pain. Get rid of the pain; anti-inflammatories do help. But just try and realize and accept and keep yourself outta situations that are gonna gaslight that. And situations, a lot of people, situations that could — traffic! If traffic pisses you, excuse my language.
[00:42:52] Cheryl:
So, when I used to ‚ so I used to work in pediatric occupational therapy. And I would, when I would work with children on emotional regulation, social emotional skills, a lot of it was teaching the parents to model. Because one of my favorite parenting quotes is, “Children don’t always listen to their parents, but they never fail to imitate them.” When it comes to traffic, which is what made me think about this is I would tell parents, if you want your child to learn a calming strategy, you have to model it yourself. You can tell a child to calm down when they’re upset. So, I would say a great time to practice this would be if you’re coming to the appointment and you’re getting frustrated in traffic, or you’re having a hard time finding a parking spot, right? You can tell your child, “Mommy or daddy’s frustrated right now. I’m gonna take a deep breath,” try to remember what, you know, do my strategy. Because it’s like we tell kids to do these things and we can’t even do them If you can’t even do it yourself, how do you expect a child?
[00:43:47] Jason:
Oh yeah. I’ll tell you of my daughter. Not too long ago, because she got mad at — I teach her to breathe. And when I see her like getting frustrated and stuff, “You know what you’re feeling in the belly there and that’s when you gotta breathe,” and stuff. Take a deep breath, and see if you feel better. And she’s, yeah, her sister pulled her hair or something. It was an accident, right. She’s only one. She pulled her sister’s hair accidentally. And a 3-year-old was ready to clock her one. I have never seen she got red, man. I was like, “Don’t you dare! Breathe.” And she’s breathed, and she did it. And I was like, I was so proud of her, I gave her cookies. I was like, you’re amazing.
[00:44:34] Cheryl:
That’s another thing. You have to reward them when they use the strategy. You don’t just punish them when they don’t use the strategy. Anyway, soap boxes. Is there anything else you wanted to say in conclusion?
[00:44:44] Jason:
I think I really covered it all.
[00:44:46] Cheryl:
Oh, I think so too. Yeah.
[00:44:48] Jason:
Anybody wants to reach out to me for any reason, I am definitely more than available. chefscookies.ca, chefscookies.ca, has a contact email there. I know you’re gonna put up all this social information. So, that’s it. But I am definitely, I’m more than available. I’ve quit my job, my full-time job to try and do small little things, like I said, to be able to manage better. So, feel free, I’m there to support you if you need it, and to help you in any ways that I can within my own boundaries. Of course, boundaries have to be in place.
[00:45:31] Cheryl:
Absolutely. Yeah. Well, thank you so, so much. This is seriously all so good.
[00:45:38] Jason:
Cheryl, I really had a pleasure speaking to you. I look forward to it hearing this all later.
[00:45:45] Cheryl:
It’s so helpful and I’m really grateful to you for being my first male interviewee on the podcast.
[00:45:52] Jason:
I really appreciate being the only male, or the first, I should say.
[00:45:57] Cheryl:
First of many. Yes.
[00:45:58] Jason:
First of many. Exactly. I think when it comes down to it, and yes, men and women are different but it really comes down to a difference of equipment. You know, we are all the same people. We all wanna be loved. We all wanna be cared for. We wanna be cherished and respected. And I think, that’s my last one.
[Ending note]
Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis. From social and emotional aspects of coping with rheumatoid arthritis, to simple physical strategies you can use every day to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.
[Ending note]
Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the pre-recorded course on your own, or you can take the course along with a support group. Learn more at the link in my show notes, or you can always go to www.myarthritislife.net. That’s life.net.
And if you like this podcast, I would be so honored if you took the time to rate and review it. I also encourage you to share it with anyone, who might benefit from it. I also wanted to remind you that you can find full transcripts, videos, and detailed show notes with hyperlinks for each episode on my website, www.myarthritislife.net. If you have any ideas for future episodes, or if you want to share your story or wisdom on the podcast. Just shoot me an email at info@myarthritislife.net. I can’t wait to hear from you.
