Summary:
Can you imagine working over 15 hour days as a chef, then not being able to comfortably use your hands due to psoriatic arthritis pain?
In this episode, Kate shares her journey getting diagnosed with psoriatic arthritis while working as a chef in London. She opens up about her post-diagnosis emotional roller coaster and shares how joining Cheryl’s Rheum to THRIVE online support and education program helped her feel more confident, empowered and supported.
She also details other programs that helped her including a mindfulness course and CBT therapy. The episode ends with Kate sharing what it means to her to live a “good life” with rheumatic disease.
Video of Conversation
Episode at a Glance:
- Kate’s psoriatic arthritis Diagnosis journey: being unable to hold a fork; MRI of her hands showed erosions and inflammatory arthritis
- Emotional Aftermath of Kate’s diagnosis: denial, depression, anxiety and more
- Finding community & support: after feeling isolated and not being able to find good answers on her own, Kate joined Rheum to THRIVE and felt more comforted, empowered and supported
- Two other things that helped kate: Mindfulness course and CBT therapy
- How Kate learned to advocate for her needs with her rheumatologists
- Kate’s favorite life hacks for being a chef with arthritis, including a discussion about what dietary interventions have helped her
- Rapid fire questions:
- What advice do you have for newly diagnosed patients?
- What’s your favorite arthritis gadget or tool in toolbox?
- What’s bringing you joy right now?
- Favorite book or movie or show you’ve watched recently?
- What does it mean to you to live a good life with rheumatic disease / thrive with rheumatic disease?
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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the next group today!
Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.
Speaker Bios:
Kate Allen:
Kate is a 35 years old chef living in London. She was diagnosed with PsA in April 2021. You can check out her recipes and stories on Instagram at @arthritischef or on her website at: www.chefkateallan.com
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
- Early aggressive tx is better citation: “Rheumatoid arthritis treatment: the earlier the better to prevent joint damage” – British Medical Journal, 2014
- Book Kate likes: Brain Changer: The Good Mental Health Diet – a book about how foods affect mental and physical health.
- Podcast Kate likes: The Doctor’s Kitchen
- Speaker links
- @arthritischef on Instagram
- https://personalchefkate.wordpress.com/ – Kate’s website
- Cheryl’s Arthritis Life Pages:
- Arthritis Life website
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
[Introductory music and Intro]
Cheryl:
I’m so excited to have Kate here today to share her experience with psoriatic arthritis. Welcome, Kate!
Kate:
Hello. Thank you. Thank you for having me.
Cheryl:
Yeah. Oh, I’m so — No, I’m so, so excited. And can you just tell the audience a brief introduction, like where you live and what your relationship to arthritis is?
Kate:
Yeah. So, I grew up in Italy, but I’ve been living in London for 12 years now. And I’ve been diagnosed with psoriatic arthritis a bit less than two years ago. And yeah, it’s been a journey and ups and downs, I think. Now the final diagnosis is psoriatic arthritis, osteoarthritis, osteopenia, and they’re still looking too, I have some gut problems. So, they’re looking into it. It might be Crohn’s disease — they’re not quite sure — to do some tests. But yeah, on the right path to, yeah, just getting better.
Cheryl:
Yeah, yeah. And that’s a lot of diagnoses to have to adjust to in a short period of time. Can you tell me a little bit more about like, two years ago, you know, what was happening before you got diagnosed? Was it hard to get diagnosed, or was it easy? Just walk us through a little bit of that?
Kate:
Yeah, I think, for me, it was very difficult to kind of think that my symptoms were related to a disease rather than my lifestyle. For me, especially, like being a chef, it was kind of a given to be always in pain, be always exhausted and fatigued. When I started, I started being a chef about 15 years ago. And back then, it was very hardcore, you know, on my feet for 18 hours a day, carrying weights, chopping, sliced meats, you know, of course, your hands are gonna hurt, of course, you’re going to feel pain in your back and your feet. And back then, the kitchen is was kind of very old school. So, don’t complain, keep your head down. Everybody’s in pain. Everybody’s feeling what you’re feeling, that chef kind of situation. And I also think I wasn’t ready for being my own advocate and kind of saying, “Oh, no, there is definitely something wrong with me, I need to see a doctor.”
And it was only kind of in my early 30’s that I decided to change my lifestyle. And so, kind of try to work a bit less and having a more sustainable work-life balance. And even then, I realized things didn’t change that much; I was still very fatigued, I was in pain. And especially in my hands. It started mostly in my hands and my fingers are slightly deformed and was getting worse with time. So, that’s kind of when I realized, okay, there’s something else going on. And then it was, I think, with lockdown. I think everybody had this time to kind of stop, slow down, and start thinking of our different priorities. So, I realized, you know, through lockdown, I was at home, I was eating healthy, I was picking all my meals, I was exercising. It wasn’t really stressful — but of course, it was the stress of the pandemic, but still, there was some pain there. So, it was only then that I decided to see a doctor.
So, obviously, during the pandemic, it was very difficult to see a doctor. So, it was all through video calls. So, with a general practitioner. I saw her on video call. And because of the symptoms in kind of family history as well — so, my cousin has psoriatic arthritis. So, she ran all the usual tests, you know, blood tests, rheumatoid factor, all of that, and nothing really came out. So, the only thing was I had very, very low vitamin D. I was deficient in that, so that was kind of the only thing. But then she said, you know, since you have a family history and since all your symptoms are there, I will refer you to a rheumatologist. So, I got referred.
Cheryl:
That’s really good. Yeah.
Kate:
Yeah, I got referred but it was kind of still the pandemic time. So, I didn’t hear anything for months. Then I got a letter for an appointment. And it was to like four months later, and by that time, I was in a very, very bad pain. Yeah, it was very much in pain. Again, I started working, I lost my job, my previous job, because of COVID. That was very stressful for me. And I was struggling to find a job, obviously, with the hospitality industry was just destroyed. It was very tough time. So, with my new job it was, it was a quite a tough one. And I was very stressed, very much in pain, and I just couldn’t take it anymore. Sorry.
Cheryl:
Oh, yeah, no, no problem. Yeah, this — yeah, I can’t imagine having your first diagnosis experienced during the pandemic. It’s just, it was a very stressful time for everyone. So, I feel for you.
Kate:
So, yeah, I just couldn’t take it. And I remember going back home from work, and I wasn’t able to hold the fork with my hand. It was so painful. I couldn’t move it. I was just crying in pain. So, I decided to see a private rheumatologist because that was the only way that it was going to be like, a lot quicker. And I did get an appointment within days.
Cheryl:
Oh, wow.
Kate:
So yeah, it was really good. And obviously paid a lot of money for it. It was definitely worth it. I just needed some help and some answers quickly. And this doctor was really helpful. He realized straightaway what was going on with the symptoms and family history. And so, he booked other tests, and he booked an ultrasound. Again, nothing. Everything was good. Ultrasound didn’t show inflammation. He explained that, you know, there are different types of arthritis, and not all of them can show, and if you don’t have inflammation at that specific moment, it might not show. And he decided to start with hydroxychloroquine straight away. And also on prednisolone, just to help me with the pain. And that was very helpful. I was — I didn’t sleep for a few weeks then. I was full of energy, which was amazing, and I was pain free. So, that was, that was a bit different experience. But yeah, it was good.
And then, it was about two months I was taking hydroxychloroquine and nothing happened. And by then, I had the appointment with my, with the National Health rheumatologist. And so, the rheumatologist basically said, you know, “The next step would be going to methotrexate. But it’s just so much easier for you to do it through the National Health rheumatologist because you will have to do all the blood tests. And if you go privately, it’s gonna obviously like cost a lot of money. So, wait to see what they say, but, you know, if I can be of any help, just let me know.” So, then, when I had my first appointment with the rheumatologist, it was kind of starting from zero again, obviously, because they were like, you realize you had kind of — you’ve seen someone else, you’ve been diagnosed. But we kind of, we will take that, but we will need to run all the tests again. So, all the tests were run again. Ultrasound, X-ray, everything.
Cheryl:
Wow. You’d think they wouldn’t. Yeah, that’s interesting.
Kate:
Yeah. So, yeah, it was just starting from zero. So, it was a bit frustrating for me, just to run through all this. I mean, it was it was fine. But, you know, it was just like, can we please find a solution? Because I was in a lot of pain, and obviously prednisolone, you can’t take for long periods of time.
Cheryl:
Oh, yeah. Just, I just want to add a quick little piece of context for those listening that, you know, one of the kind of cruel ironies of these diseases is that they tend to take a long time to get diagnosed for like systemic healthcare issues, whether that’s in the UK or the US where there’s, you know, long wait times for rheumatologist, there’s a rheumatologist shortage in the United States. It’s really, really bad for pediatric rheumatologists. And then, but all of the data and research shows that the earlier you get diagnosed and treated, the better your long-term prognosis. So, it’s kind of a rude awakening or another cruel irony when people finally, when if you do more research on your condition, you learn that there can be a feeling of oh, my gosh, like I suffered unnecessarily in the sense that like, if we could turn back the clock, and like, if you could have gotten that diagnosis, you know, what I mean? I know you can torture yourself thinking like that. So, I’m not encouraging people to think that way. But I’m saying for those listening who maybe don’t have a diagnosis yet like, there are a lot of objective reasons to be really aggressive about getting a diagnosis because the earlier you get accurately diagnosed and treated, the better, just objectively across the board. So, anyway, just throwing that out as like a teachable moment.
Kate:
Yeah, absolutely. Yeah. I realized with the private rheumatologist I saw like, he was like, let’s start now. Like, let’s not waste any time. But yeah, a different story with the NHS rheumatologist. I mean, they were lovely, but obviously on their side, they needed to have all the data to make sure there wasn’t something else.
Cheryl:
Well, and just for those in the United States listening or other places, NHS is the nationalized healthcare in the UK — or is it UK or all across the board?
Kate:
UK, yeah.
Cheryl:
Okay. Okay. Yeah. Yeah, okay. So, they ran the tests again.
Kate:
They ran the tests, yeah, and everything came back normal again. So, I get a call from the rheumatologist. And she’s like, “Yeah, everything’s normal. But again, you know, your symptoms, all the family history. And so, just to be sure, I want to do an MRI on your hands, because I can see there’s deformity there as well.” And so, finally, MRI came back and there were erosions in my hands. And which, erosions that shows it was inflammatory arthritis. And in my left hand, I had osteophytes as well. So, they said, “Okay, yes, this is — you’re being diagnosed with psoriatic arthritis. So, you did hydroxychloroquine already. So, we’re gonna put your methotrexate”. Then, that journey started.
I think, for me, at the beginning, it was denial in the sense of maybe like, protecting myself, like, realize what was really going on. Because I remember my partner was like, “Wow, you’re like, you’re amazing. Like, you’re taking this so well, like, you’re like, you’re so strong.” I was like, yeah, because I don’t believe it. But I didn’t say anything. So, everybody was like, okay, she’s very cool about this. And it was like, one month in, two months in, three months in. And then, I think starting methotrexate, and the side effects, and I had a massive flare-up as well in the middle. And then, I kind of realized, okay, this is real. And then from denial, it’s kind of depression, anxiety of, you know, what is going to happen? What does this mean? What, how am I going to live? You know, also, with my work as a chef. I was reading, you know, all these sad stories, and, you know, there’s inability, there’s, you know, reduced movements, and I could see my hands, which — and I was just panicking a little bit. And, so yeah.
Cheryl:
So, no, I think this is such a, it’s such a fascinating dichotomy. Because I remember, I remember, in one of the first Rheum to THRIVE groups meetings we had, a lot of people were saying, they felt weird for being in denial, because they’re like, “I understand that I have this enough that I’m here, like, I’ve joined this program. But I also like, in the back of my head, I’m like, do I really have it?” And I think there’s like this, like, I really identify with what you’re saying about it being protective, because on the one hand, if you’re in denial, that means that you don’t have to accept this long-term, chronic condition. But if you accept it, there’s like, there’s benefits and downsides of both, right? Because if you accept it, then you’ve opened yourself up to there’s a reason for your pain, and there’s a path to improving your pain, and improving your condition through, you know, medication and lifestyle. And whereas I think, for me, was what protected me from going fully into denial is that well, okay, if it’s not rheumatoid arthritis, then I’m back to square one with pain with no answers. And that was the worst. So, I don’t know. Did you feel any of that where it was like, did you feel any relief at all to have an official diagnosis or was it all just swirling?
Kate:
I think, for one part, yes. And I realized that when it was taken away from me recently, when I had my follow up appointments a couple of months ago, because obviously, all of the classic medications weren’t working and I had an allergic reaction with sulfasalazine as well. So, then the rheumatologist for our appointments, she was like, “Oh, maybe it’s not psoriatic arthritis. Maybe we need to go back to square one and rethink everything.” And that was when I was a no, no, don’t take this away from me. Like, you gave me a name of what this is. And I need, I need a name. I need to know what all my symptoms are.
Cheryl:
Yeah.
Kate:
And what can help, and what are the treatments for it. So, yeah, I think the time that it was kind of taken away from me, and then, obviously like, it was, I did an ultrasound after that just recently and I did have inflammation, so that’s the diagnosis reconfirmed again.
Cheryl:
No, but —
Kate:
Yeah. Sorry.
Cheryl:
No, sorry. No, no, you keep going. Keep going.
Kate:
Yeah, I think it was just, it’s a long process. I think, you know, all these steps of grief and like denial, depression, anxiety. I think, especially like being in your group and realizing that everybody goes through them is in a way comforting, and it gives you the confidence to move forward. And yeah, that’s what helped me the most, I think, realizing that I wasn’t alone and there are other people that are living or have lived and have gone through your depression and anxiety. And it’s a circle, in a way. You go back to it, you know, you have some bad news, you have a bad appointment with the rheumatologist, and it’s fine. But it’s, as you say, you get all the tools in your box. And to be able to kind of accept and to know what works best for you, and how to move forward? And that, yeah, like getting all the tools while it’s the process to accept what I had, I think, yeah.
Cheryl:
Yeah. So, often, I think that we can see patterns in other people better than we see them in ourselves, right. So, like, if you’re experiencing kind of an issue of like ping-ponging back and forth between denial, and then kind of anxiety about the condition that you’re not in denial in that anymore, and then you ping-pong back and forth. And you can see — when you’re in a group setting — you see other people go through that, and it’s much easier to identify it in someone else. And then also be like, well, wait a minute. I’m also going through that. It’s almost like you work backwards, you know. So, but — oh, shoot, I was gonna say something else. My train of thought just, the train of thought left the station. I don’t remember what that was. But, um, but yeah, I mean, I’m so glad you joined the group.
But I do think people sometimes will say like, “Oh, well, I don’t really have a diagnosis yet,” or, “I’m not sure my diagnosis is correct.” And so much of what we go over in Rheum to THRIVE is these tools to deal with ambiguity, and cope with ambiguity, cope with ups and downs, cope with the fact that you don’t know what’s going to happen tomorrow necessarily. And so, that’s, you know, you’re not the first person in the group for better for worse that has had their diagnosis kind of questioned by their medical team or reassessed. And, you know, when this happened to another person who got changed from rheumatoid to ankylosing spondylitis. It was like, I tried to kind of help give context to the conversation by saying, you know, validating your emotions, but also saying, long-term, it is really important to have an accurate diagnosis, because you want to give the right treatment at the right time. So, even if it’s like there’s a mourning process when your diagnosis has changed, it’s in your best interest to have the right diagnosis. So, anyway, but yeah, like, I know that you have a lot of, a lot of tools in your toolbox. So, you know, you mentioned Rheum to THRIVE and what are some of the other tools that have helped you with the coping and the emotional ups and downs?
Kate:
Yeah, so I think when I made contact with you, I was kind of in in the deepest, darkest place, and it was — it came at such a perfect time because you were starting the course in like within a week, I think. So, that was very, it was like, oh, okay, yeah. I need to sign in, like sign in straight away. So, that was great. And in the meantime, I was also doing a mindfulness meditation course which I’d came across through this lady in London, and she’s a hypnotherapist and a meditation practitioner. Very lovely person. And yeah, I was having a tough time with depression, and I was reading about a hypnotherapist. I was like, okay, that’s interesting. I want to — I was very curious so I went to see her. And I had a few sessions with her. And she said, you know, you have all your tools to kind of go through this. And I think what would really work for you is meditation. And so, again, she then started the course a few months later, which she does every year, this mindfulness meditation course, and it’s similar to what we did. So, it’s like a Zoom meeting with four other people. And she kind of teaches and explains what meditation is, the different types of meditation. And it was very hard for me at the beginning. Because, yeah, I think for everybody, you think meditation is about, I need to erase all my thoughts and to, you know, cross legged and of course, it’s not like that at all. So, and it’s not about removing all the stress and all the anxiety. It’s sometimes, it’s also about acceptance.
So, that was very — and I realize now, after months, and practicing, and practicing, it’s getting much better. And it’s not necessarily that I meditate every day, but I’m being, I think, a bit more mindful, in general. Like with CBT as well, like I’ve learned now my three favorite words are acceptance, compassion, and kindness. That kind of, I always try to have those words in my mind. Because I realized they are very useful for me. Acceptance, like, we’ve talked about in the group as well, and just, you know, accepting that sometimes the pain is there, and you have to go through it, and get some help with our different tools. But that goes with a feeling of relaxing. And for me, it was accepting that stress is there.
Cheryl:
That’s so hard.
Kate:
I did modify — like, being a chef, unfortunately, is a very stressful environment, it’s very hectic. So, I did kind of mold and try to change my work to make it more, yeah, a bit less stressful, let’s say. But there is no — even the world we’re living, it’s just difficult to — you can’t remove the stress from your life, from this world, unfortunately. So, it’s more, yeah, now more like, okay, yes, this is stressful. This is a stressful situation. But either I can use my tools to work on it, or I just accept it. And then —
Cheryl:
Yeah, and I was gonna say, so as a very like goal-oriented person, I think if you only look at stress reduction, then if you have any, like — maybe I’m just being a perfectionist, but I’m like, if my goal was to reduce stress, then if I have any remaining stress after I do my tools, I’ve like failed, right? Because I still have stress. And the goal is to reduce stress or eliminate stress. Whereas if you’re like, my goal is to cope better with the stress, it actually long-term does reduce the stress. It’s the same with like, the happiness trap. Like, you’re actually happier when you stop trying to be happy all the time and thinking that your life should be just pure happiness one moment after the other. So, I don’t know if that resonates with you at all.
Kate:
Yeah, absolutely. Absolutely. And yeah, that’s what the program, at the beginning, I was like, I need to eliminate it, I need to get rid of stress in my life. And, yeah, that just makes it a lot more stressful.
Cheryl:
Yeah, yeah. And I think that there are conditions, like life is an inherently stressful endeavour, right. And there’s never been a time in human history that life has — I mean, maybe, actually I should be culturally, if I’m culturally competent here and I remember my anthropology training, there are cultures that that do have a lot more like rest in their day, you know. Like, different parts of the world there’s cultures that have evolved, you know, where people are, like, they have leisure time. And they — so, it’s not that everyone is like, inherently as stressed as like the modern Western world is.
But in general, saying that, okay, you know, we have our brains and at least according to a lot of the research I’ve read is that our brains are kind of wired towards paying more attention to negative events than positive events because negative events and negative possibilities are the ones that have more of an effect on our survival. And that survival is like our main goal, you know, right, as a species. So, like to survive and to propagate your genes, right.
So, anyway, long story short, yeah, setting a realistic goal that like, I understand that stress is not good for me, that it’s inflammatory. It’s not good if you’re living with an inflammatory condition like psoriatic arthritis. But also saying I also accept that stress is pretty much inevitable most days. And then, you’ll be pleasantly surprised if it doesn’t occur one day, but you know, I’m going to have a better quality of life if I can cope with the existing stress.
So, but I think, yeah, being a chef, I always say when people get diagnosed, they’re like, you know, or people will say like, what are the worst jobs to have or the hardest jobs to have if you have any sort of inflammatory arthritis that affects the hands. And I would say, like, being a massage therapist, and like a chef are two of the hardest ones.
So, but sorry, I did want to ask you more about your hacks that you’ve learned as a chef, but did you want to say anything more about like, you know, the mindfulness practice and CBT and what’s helped you mentally?
Kate:
Yeah, I think CBT was very helpful as well, because I had therapy before. I had like a long-term relationship with a therapist, it was like six years. And in the past, I went through depression for a while and anxiety, too. And that was very useful, but it was kind of, like a very deep therapy, you know, going through all your traumas, and I realized at this time, that’s not what I needed. I needed something more practical, a bit more structured well in what can be useful for me with, you know, having a new diagnosis. And CBT, I think, was really, really good for me. So.
Cheryl:
Oh, it stands for cognitive behavior therapy, by the way. I always try to remember to define the acronyms.
Kate:
Sorry, completely forgot. Yeah.
Cheryl:
Yeah, no it’s —
Kate:
So yeah, it was, it was very helpful. And I’m quite visual, and I love my lists; I love to write things down. So, being able to write things down, and also, she talked a lot about images. So, when you have a negative thought, what do you see? What are the images? And that was incredibly helpful to me.
Cheryl:
Interesting, yeah.
Kate:
And, for example, also, I remember having this image and like being a puzzle, so a puzzle, you know, you put it together, but it can be very fragile because all the pieces can kind of fall if you didn’t have like a stable top to keep it on, it kind of falls of apart. So, there’s kind of, so one piece falls down. And every piece is like one piece of stress. And one of the pieces is an argument with your partner or, and kind of everything, when more than one piece falls, it’s more difficult to put the pieces back together in a way. So, she was saying, say you had a bad day at work, you’re stressed, you had an argument with your partner, you know, there’s different things going on, and it kind of — you all bring it together in one big thing. And actually dividing it — so, for example, situation one, stressful moments at work. How can I work with that? To I accept it? Do I work on it? Do I have, you know, five minutes of meditation, bit of breathing, whatever? I said, dividing it makes it less overwhelming for me. For me, it can work really well. Yeah, that was really useful.
Cheryl:
Yeah. And I also like the idea of naming things. Just the act of naming it, like this is my anxiety about my work, or this is my, you know, and separating it out so it’s less swirling and overwhelming. That’s super, super helpful. And I do think it’s a good lesson that like different therapists at different times in your life, and different styles of therapy. Like, one-on-one individualized therapy can be useful in different ways, right. So, you know, maybe you were saying right now, the right thing for you was a more practical kind of logical approach like CBT versus previously you needed like a more, a different kind of trauma-based approach or, you know, and I think that therapy is not just one thing, right? And even physical therapy, occupational therapy, no therapy is just one thing. There’s an art and a science. So, it really is for those listening — I know I’ve said this a million times but, you know, maybe it’s your first episode — but that you know, it is normal to have to interview a couple therapists or take a little while to find a good fit for you. And that’s just because you don’t like the first one you talk to doesn’t mean you should quit or say that therapy is not for you, you know?
Kate:
Yeah, exactly. It just takes time. And, as I say, for different people, there’s different kinds of therapies in different situations in life. And you can take time. I mean, it took me a while to find one that I could relate to. So, you know, you have a kind of, as soon as you find the right one, I think you realize straight away, and it just kind of clicks. And that’s important, because you’re gonna say, you know, some very personal things. So, you need to, you need to feel comfortable with that person. Absolutely.
Cheryl:
Yeah, yeah. And before we talk about, I really wanted to get more into the chef stuff as well. But I’m gonna go back actually to you were saying that you found Rheum to THRIVE, like, initially. You found it within a week of when it was going to the next group was gonna start. But you also were saying it was kind of like a low point for you. Like, what were some of the thoughts that were swirling in your head at that time, if you can remember? I know it’s probably painful to go back.
Kate:
Yeah, I think it was — yeah, it was that time that I was on methotrexate. So, I had really bad side effects. And I had a flare up. I was very busy at work, very stressed. It was kind of everything put together. And I just remember, I think it was also, it was April when we started
Cheryl:
Yes.
Kate:
Yeah. So, here was like, the weather was really awful. It was raining all the time; it was really dark. There was a kind of, I have, you know, just images of everything being very dark. And I just couldn’t find answers. You know, you go through your research from Google. And, but it’s all data like, you know, there’s no — there’s not much. Of course, I wasn’t on social media at the time. So, that is why I couldn’t, I didn’t have that sense of community. I was watching a few YouTube videos of people like having that experience. But it was — I couldn’t find much. And probably I didn’t have the tools and didn’t understand how to get to people. And I think not having social media is also a big part in it. It’s difficult to create a community. So, yeah, I think it just came at the perfect time. And it, you know, when you have moments where you’re going to be really confused, and you’re going to be feeling very alone, very lonely. Because your loved ones, of course, they’re there and they try to help you, you know. I’m lucky. I have my partner and he’s been so supportive. So, so amazing, because I can be very grumpy when I’m in pain.
Cheryl:
I’m so glad you have that. You deserve that.
Kate:
Thank you. But yeah, you do feel the need to have someone that is feeling what you’re feeling, and to just, just to listen and hear that someone went through — yeah, went through that. And it’s, yeah, it’s very comforting and calming. And also, being able to learn everything that you teach is very, it was very helpful. Because I think we said that knowledge is power, and also being able to advocate for yourself, and being able to go to your rheumatology appointments and know what you’re talking about, I think. I always was used to being very passive, like the doctors, this is our priority. And I can’t say anything, I can’t contradict them. But then, you want to have that knowledge to be able to say, “Excuse me, like, I need this. Can you explain again why is this, you know, why are you doing this and not this?” You know, it is, again, it’s gonna be a long relationship with them, so you want it to be equal. And I think to be able to be equal, you need to have that knowledge.
Cheryl:
Yeah, yeah. And it really is interesting. I’ve seen that so many times in the group, because I’ve done it, you know, over a few years now, but where people will — they’re scared to talk to their doctor about something or bring up a question that they have, and that encouragement from the other members and the knowledge that you’re gonna have to report back to them like, “Okay, next meeting, like let us know how it goes,” like that can be that extra nudge, you know, or just hearing, I mean, like, you really advocated for yourself when you had a kind of not great interaction with your primary doctor — primary rheumatologist, sorry. And then, you know, some people in the group — or sorry, is it okay if I tell them the story?
Kate:
Go ahead. Of course you can, I was gonna share it as well.
Cheryl:
Yeah, well, I’ll just set the stage a little bit. But I’ll say from the experience, if you have a not great interaction with your health provider, a lot of times people will say, get a second opinion. And that’s actually what I was kind of leaning towards suggesting or suggesting you think about in your case. But the other option is to commu — to talk to the provider and like, seek a resolution or seek a repairing of that relationship, which there’s so many benefits to that, because that provider has your knowledge of your case. If you get a second opinion, you’re starting from square one. Again, a lot of times second opinions are warranted and necessary, but yeah, tell me a little bit about how that was like, how you got the courage to advocate for yourself and go back to that provider?
Kate:
Yeah. Yeah. So, I think it was incredibly useful for me to share it with the group and to get all the different opinions. Also, to have someone that was going through this, had gone through the same thing. So, being diagnosed twice, and having a different diagnosis the second time. And yeah, just getting all the advice and kind of the courage to do something about it. So, yeah, for me, initially I thought, yeah, I’m gonna get a second opinion. But in the UK, a second opinion means, again, paying a private rheumatologist. And I just, I started thinking. I said, okay, this primary rheumatologist, I’m gonna see her for a while. I want to create a good relationship. And I want her to understand that she needs to explain things to me, like, properly. And I realized also, in a way, you know, healthcare is overwhelmed. We’ve said this before. And they go in, you know, they’re seeing so many patients a day and sometimes it just gets mechanic probably, you know — okay, this 20-minute appointment; next, next, next, next. And you don’t think about the compassionate elements about being kind, because you just have so much to do. And I do appreciate that completely.
So, I decided to send her an e-mail with basically saying, you know, our last appointment left me very confused. And I said, I don’t understand what’s going on, and all the points I didn’t understand. And what for me, made sense and what didn’t. And she came back to me very quickly, which was surprising. And she was very nice in the e-mail. And then, in our next appointment about a month later, like, she was very different. And she was very compassionate, very kind. And she explained everything. She treated me like an equal. And yeah, I think the relationship kind of turned and she realized that I wasn’t going to take, you know, just simple answers and without, you know, without any explanation. So yeah, I think it’s definitely, it’s very important to, if you’re not sure about something, if something is not clear, don’t be scared. And I’d always been very scared as well in rheumatologist appointments. Like, I have 20 minutes, there’s gonna be someone else. I was always very anxious that I couldn’t take too much time because there was someone else waiting after you. But, you know, it is your time, and you do have the right to be there and to have your doctor explain everything. Yeah, absolutely.
Cheryl:
No, that’s so — it’s such a good teachable moment, I guess, for everyone else. I keep saying that phrase lately, but, and I think, you know, in this case, it wasn’t just that the rheumatologist hadn’t like, explained things in a way that you could understand. But that, I think, if I remember correctly, that you kind of felt like, emotionally there was a dismissal of you or a lack of understanding that, you know, if they were going to potentially like change your diagnosis or question your diagnosis, like that’s a huge deal for you, right, as opposed to just looking at it just kind of like, “Oh, yeah, well, now we’re not really sure because you haven’t responded well the meds but, you know,” and just, “Okay, fine, bye,” you know, it was kind of like a very inhumane kind of conversation. And it’s like, you both win when you get to have a better conversation, right, when you get to have a conversation of mutual respect and, you know, I think it was really wise that you — it’s really in your best interest to have a good relationship with the provider and your health care providers. And, you know, a lot of times we can get — there are definitely cases where people need to quote-unquote, ‘fire their doctor’. I’m not, you know, going to say that that’s never appropriate. It definitely can be. But sometimes, because we feel so as a patient, you are not in the power position, right. At the end of the day, no matter how strong the partnership is, the doctor has the power to write a prescription. You don’t have that power. So, it’s — oh, sorry, I have like five different thoughts.
But it’s in your best interest to have a great relationship with them. And oh, yeah, because you don’t have power, often, as a patient, you can feel like, I’m gonna assert my power by firing you as my provider. And it feels good in the moment. And again, it is a hundred percent necessary in some cases. There are providers that are not good, that are not a good fit for you, or just not competent, or not caring. But if you have one, only a smaller kind of bad appointment, there’s also the possibility that you’ll actually get what you want by repairing that relationship, as opposed to throwing out all that background relationship that you had with them and starting from scratch. So, again, I mean, there’s so much — one of the best things about social media is that we can encourage each other and support each other and, you know, find community and not feel alone on just the kind of organic level of like the mass social media out there, right, which is full of like a lot of great things, a lot of bad things. But one of the downsides is that I’ve seen is sometimes there are people who are like, “You need to fire that doctor, you need to —,” and it’s like, oh, wait, slow down a little bit. Again, because and I’m not saying that in a way because like ‘It’s not nice to do that’, I’m saying that because you might get what you want by staying with that doctor. There’s a possible — that’s a possibility. Anyway, so longer way of saying what you just said, in a way.
Kate:
No, but yeah, exactly like you — yeah, because sometimes it feels so good to fire your doctor, but then you will have to start from scratch again. And sometimes, it’s the only solution, as you say, but sometimes it’s communication is the key. And sometimes, it’s just really, communicating well, you can achieve what you need. So, yeah.
Cheryl:
Yeah. And I think, you know, I’m starting from a point of curiosity, you know. I think that’s in that book of like, ‘The Seven Habits of Highly Effective People’. Like, be curious — “I’m curious, like, when you said this, it felt like this. Is that what you meant?” Because that’s a good kind of conflict resolution skill in general, because often there’s like a double, like, there’s something — your paths are gonna cross. You know, like, for example, I’ve seen — again, this is maybe going on a tangent about social media, but I’ve seen people say, “Well, the doctor didn’t diagnose me, so they suck,” or whatever. And it’s like, well, maybe they’re — because an accurate diagnosis is really important, then they’re saying, “I want to — I want the best for you. And I don’t think that your symptoms meet the criteria, let’s say for an inflammatory arthritis diagnosis, and I sort of have vow to first do no harm. And if I give you methotrexate, I could potentially do harm if that’s not what your body needs right now,” right.
And I think we are like, we have an idea, as a patient, ‘This is what I need, I need the diagnosis, I need the meds, I need the treatment, I need the validation’. But the doctor might be like, I want to give them what they need. And what they need is they need a referral to another specialist to make sure that this is the right thing for them. But I’ve seen people say, “Oh, they just passed me off to another specialist. Like, they don’t want to deal with me anymore.” But actually, passing you another specialist could be a sign of respecting that specialist’s authority. Do you know what I mean? It’s all like this perception game, you know? And so, starting with curiosity rather than judgement on both parts; on the doctor’s part, not judging us thinking that we’re hypochondriacs or whatnot, and then on our part, understanding that maybe the doctor does have your best interests at heart. And maybe what you think is the goal of this appointment is not what’s actually in your best interest.
Kate:
Yeah, exactly.
Cheryl:
Was that one long sentence.
Kate:
Yeah. And as humans, like we have negative thoughts. Like, it is in our nature thing to have to have these movies of like the worst-case scenario, always. But yeah, just a curiosity and like non-judgmental and be like, “Okay, this is what I receive. But maybe what she was saying is completely different,” or maybe I need to, yeah, it’s just, yeah, just not to — to try not to have all these negative thoughts is definitely helpful.
Cheryl:
Yeah, assuming positive intent, you know. And you can actually end up like, killing them with kindness sometimes. And be like, “I’m sorry. Like, I know you probably like were —,” you know, that A-B-C, you know, “You were probably trying to do like this amazing thing but I’m feeling really confused and I’m sorry,” like, kind of like — and again, that’s my personality to be a little more like, you know, def — what’s the thing — like, deferential at times. Which is weird, because I’m also like a fierce advocate. But anyway, you know, but I’m like, I find it’s in my favor to be deferential sometimes, to say like, “I know that you already explained this, but can you tell me again like why do I need to fail this medicine before starting the biologic,” or something, you know, like, saying kinda not in a confrontational way, in a more like, “Can you just explain this to me?” You might get more bang for your buck. Is that an American phrase, more bang for your buck?
Kate:
I think so, yeah.
Cheryl:
Oh, okay.
Kate:
Yeah, I think it’s more American.
Cheryl:
More stuff for your stuff? I don’t know. Yeah. Better outcome for a smaller amount of effort. Okay, now we’re gonna talk about being a chef, because, you know, people have to cook even if they’re not chefs, but some people do, you know, kitchen life hacks is like, I would consider, like, the low hanging fruit for me when I make videos. It’s like, it’s one that, in the sense that everyone is asking about this. And everyone wants information. Like, cutting with knives, holding a fork, because it’s so many fine motor skills and small hand skills involved. What are some of the things that have helped you, maybe work around strategies or gadgets? Throw it out.
Kate:
Well, I did see a hand therapist, because I was struggling quite a lot at work. And what was very helpful was kind of using your hands rather than your fingers to hold stuff. And if you’re carrying a pot, with both hands. Knives, I still use my knife. Because it’s just, yeah, for a chef, it’s difficult to — yeah, but I am in a very good position that I am the head chef, so I can tell others what to do. So, because there are certain things that I really struggle in doing now, like filleting a fish, or like boing a chicken is something that I really, like, I just can’t do it, the rest of the team does it. And so, yeah, I think using the hands, trying to get breaks, as much as you can find it’s just impossible. But I mean, I did change restaurants. I’m working now in a place which is not as busy, and we only work daytime. So, I did make those changes, because otherwise it wouldn’t be sustainable. Because realistically, working as a chef, it doesn’t go with living a healthy life. It’s very difficult to have both, because you’re kind of cooking when you should have your lunch or your dinner. You’re on your feet for many hours, you’re carrying weights. So, yeah, it’s quite, it’s quite tough, but you kind of adjust. And now I’m adjusting even more by reducing my hours. Because luckily, I work in a company that kind of understands and is very supportive on that side. But yeah, I think, cooking in general. Like, I love cooking when I’m at home as well. Sometimes it’s difficult, especially when after a day’s work. It’s difficult for everyone for, too, to cook from scratch and get whole foods. And but I do try, and what I do sometimes when I have more energy, like I cook — I have a big batch of kale or I have — I cook the whole batch and then I use it for different recipes throughout the week. So, yeah, cooking a whole cauliflower. And again, using it for a few different recipes that I got it for the next few days. That really helps.
Cheryl:
Yeah. I had actually another person living in London, Emily, the @ArthritisFoodie. She shared like her tips and that was one of hers too for energy conservation and joint protection. You know, definitely batch cooking ahead of time, freezing things, you know, and I’m curious if you ever like, chose what you’re going to eat based on it being easier to make, because I definitely do that, do you know what I mean. Like you’re saying filleting fish is hard. So, like, do you have less fish because of that? Or do you just delegate the filleting? Or do you alter what you’re going to eat based on how easy it is to make?
Kate:
Yeah, absolutely. And I have my partner who is my sous chef and he does all the chopping and slicing.
Cheryl:
Yeah, that’s great.
Kate:
And but yeah, like food is a massive part of my life. And not just because of work, but I realize it makes such a difference on how I feel. And so, I am gluten and lactose intolerant as well. So, I do have a gluten-free and lactose-free diet. We eat mainly plant-based, but not just. So, I love fish. And there’s actually a fishmonger close to us and they do the filleting. So, if I buy fillets, and I buy mackerel because also, it’s like, it’s kind of a cheaper, cheaper kind of fish. So, more accessible to everybody. And yeah, also, like, frozen things. I think — I think it’s a general thing, but always just checking that you shouldn’t buy frozen food. But in reality, like, it’s good. Like, chopped frozen veggies, frozen fruits are actually really good. And it’s so easy to cook with them. And they retain all the flavor, all the freshness. So, yeah.
Cheryl:
Oh, that’s really good. Yeah, I started making smoothies with frozen spinach. So, it already comes — it comes in like one big, giant congealed thing. So, then I have to like kind of thaw it a little bit and then I put it in a little — I learned this from, I think, Christina, @ThatArthritisDietitian, online. She’s also been on the podcast before a couple times, but where you put like, you pre-measure out, you know, some frozen apple, strawberries, banana, you know, and then the spinach, put it together. And then, all you have to do is dump that in with like, a little bit of like — I try to get like, I mean, I’m trying to make it really basic, right. It can be like any carbohydrates, fat, protein, and then some, you know, vitamin/mineral stuff. So, I’m like, okay, if it just has fruit, and spinach, I gotta add a little bit of some sort of fat and protein, too. So then, I add like, some protein powder and almond milk and then some almond butter or some, I like nuts. I don’t know about you, but you must have to have nuts with being plant-based. I’m guessing.
Kate:
Yeah, I love — I love nuts. I love nuts, seeds, legumes. And we sometimes also have this like clean eating for a week. So, we do like smoothie in the morning. And then, we do like a vegetable smoothie at lunch. And then, at dinner, we have grains, which can be quinoa, buckwheat, millet with veggies, with some protein, so —
Cheryl:
I love millet. Sorry.
Kate:
I love it. So good. Chickpeas, and some nuts and seeds on top as well, and a nice dressing. I love extra virgin olive oil. I think everyone needs this.
Cheryl:
Me too! Oh, but you’re from Italy. So, you must have like, the real thing. Yeah.
Kate:
Yes. Yeah, I need that in my life. And they are studies that it’s actually really good for you. So, yeah, definitely, like I have that. And yeah, avocado, I really like. So, yeah, when I do those clean eatings, like the first — you do the first two days like, super grumpy, headaches. But apparently, it means that it’s working. And then, yeah, and then because your body’s like, what’s going on with me?
Cheryl:
Right, right. Yeah.
Kate:
Being grumpy and stuff. But yeah, apparently, yeah, it’s normal and then kind of gets better and you feel more energized; less pain, usually, as well.
Cheryl:
It’s kind of like, I think, sometimes —
Kate:
It works for me.
Cheryl:
Oh, sorry. I was thinking about certain things, like a massage, like they actually, you might feel temporarily worse but long-term better because it’s like they’re kind of waking up different, you know, things and releasing different things that have been kind of just sitting in your fascia and your muscles or whatnot. So, sorry. I just thought, yeah, I think that it is, that’s what’s really hard. Again, we get into that ambiguous in the uncertainty territory, which is my main anxiety trigger, right. Is anxiety — is ambiguity. Like, I’m not sure what to do, and then uncertainty, like I’m not sure how long this is gonna last or, you know, plus small spaces. If you put all those three together, it’s terrible. But anyway, you have to learn like, okay, well. Then some triggers, like for me, being out in the sun. It right away leads to fatigue and right away leads to like me feeling badly. But other times, you can do an action that actually makes you feel a little bit worse temporarily, but then long-term way better. Like, it’s hard. It’s hard to figure out when do you take that data and be like, ‘Oh, I need to stop this thing, this made me worse’ versus ‘I need to stay with it’. Anyway, do you struggle with that too? It’s okay, if you don’t.
Kate:
That’d be lucky. Like, we’d be lucky. I think because my body like really tells me if something is not good for me. So, like for years I had gluten and I was getting very bad, and I can’t have junk food; I can’t have deep fried. So, I always had like a healthy diet. But, you know, I do have, sometimes, take away and if I’m lazy I don’t want to, you know — we all have, we all need comfort in our lives.
Cheryl:
Oh, my gosh, you know, I need to ask you because my — offline — but my favorite food is Thai food and Vietnamese food. I guess ‘foods’ plural, because those are totally different. But I have tried on my own totally just muddling through trying to make certain things like peanut sauce. And I’m like, this is so far from what it tastes like at the restaurant. Like, I don’t know what I’m doing wrong. But anyway, it is, yeah, I’ve heard and read that a lot of times the restaurant food tastes can taste — or the takeaway foods and fast food, it tastes better because they put a whole bunch of, you know — I’m not saying that your restaurant food is not good, but, you know, that maybe they put a lot of extra sugar, butter, salt or stuff that’s not quite as healthy as making it on your own. But I’m like, I really want to just learn how to make you know, pad Thai and have it tastes good. Or like, tom kha, tom kha gai soup, like the coconut soup. I even went and bought —
Kate:
Oh, so good.
Cheryl:
Yeah, it’s so good. I’m always craving that. Anyway, sorry. So, I know. But yeah, but food is one of the most common questions people ask, too. There’s the life hacks; how do I decrease the hand pain. And then, there’s, you know, is diet something that’s, you know, diet not as in a special diet, but is nutrition something that can actually help? And so, it sounds like in your case, it clearly has had an effect that you can feel. So, you’re saying you have reactions to foods, like is it in your joints and just systemically? Like, I know I get really bloated if I have had gluten or dairy, like it’s beyond just the arthritis part. Is that the same for you?
Kate:
Yeah. Yes, I get really bloated and yeah, just gut gets weird and I don’t feel good at all, but also in the joints. Like, it definitely brings flares and especially alcohol, as well. I basically stopped drinking. You know, I have the occasional maybe once a month if we go, if there’s something going on, but yeah, it’s just I feel so awful the next day, even if I have only one drink. I just feel very terrible.
Cheryl:
I’ve never liked alcohol, too. Yeah, my body just doesn’t like alcohol. Like, anyway. Yeah, it’s interesting. Like, sometimes your body kind of tells you what it needs, other times — before I went gluten-free, I think the gluten reaction for me was a very slow one. And because I had it every single darn day, I was like no, I have no problem with like crackers and bread and cereals. It wasn’t till I tried eliminating it. And I was like, oh, my gosh. Like, I feel so much better overall, like I didn’t know I was bloated all the time. It didn’t really affect my rheumatoid arthritis in a linear way that I could tell but my overall health and sense of bloating and sense of digestion, like I’m actually absorbing foods and nutrients, you know, so anyway, sometimes your body — and long story short, sometimes your body tells you, other times your body doesn’t. I think my body was, or my body, maybe it — well, it was, sorry, it was telling me but it was telling me in a way that I was still kind of comfortable enough that I could push through. And then, once I eliminated it, I was like, oh. What I thought was normal was not normal.
Kate:
Yeah, I think is more that way, like okay, that’s how it actually, how it is. Because imagine me growing up in Italy, you know, pasta, bread, pizza, literally every day. So, even when I go back home — my family lives there — like, they don’t believe in gluten intolerance. Like, it’s not like a thing. Like, well, what if you can’t have pasta? You can’t have bread? That’s crazy. So, not everybody, but it’s just, you know. I’m like, yeah, it is a thing, actually. Yeah. Yeah, it’s just so much in the culture, you know, you have to have pasta, you have to have pizza.
Cheryl:
Totally.
Kate:
Like, “No, this is not real. It’s not a thing.” Like, okay. Yes, sure. Can I have some veggies, please?
Cheryl:
I know. Oh, my gosh. Oh, my gosh. Well, I have heard that some regions that Italy — and this is just something I read online — but some regions are really good about providing gluten-free options nowadays, but maybe that was a tourist thing.
Kate:
It is changing.
Cheryl:
Oh, okay.
Kate:
It is changing. Yeah, I must say, especially the recent years. There are more and more people with celiac disease as well. So, actually, the government gives money to celiac people to buy these foods because it’s very expensive. So, it gives like, you know, to buy these ingredients. So, it is changing. But like in the common, you know.
Cheryl:
Yeah.
Kate:
It’s like, nah, you have to have your pizza. It’s just good for you. But yeah, it is definitely changing.
Cheryl:
Oh, my gosh. Well, this is so fun. I want to talk to you more about food. But I want to actually, just for sake of time, I’m going to start this new segment I’ve decided on about on like rapid fire questions. And one of them is one I’ve asked everyone in the past, too, but then I’m going to ask some more kind of quicker questions. But what, firstly, what are some — what do you like to say to newly diagnosed patients? Or what’s like a piece of wisdom or advice you would give to somebody who just yesterday got diagnosed with psoriatic arthritis, and is like, “What is my life now?”
Kate:
I think definitely join a support group. Go to Rheum to THRIVE.
Cheryl:
I didn’t pay her to say that.
Kate:
And this is not an ad, yeah. But no, I think, you know, so easy to get caught up in your Google search and, yes, just seeing the data and seeing what it is, what are the symptoms, what are the treatments, but it’s so much more. So, yeah, I think creating a community with social media, with a support group, is something that helped me very much.
Cheryl:
That’s awesome. Sorry.
Kate:
Thank you. Yeah, changing your priorities as well. You know, when you — I changed my priorities. Before this, it was work, like my priority was work. There was nothing else in my world. And, you know, my body, both my mental and my physical health came after, or didn’t come at all, for like many years. So yeah, change your priorities, if you can, obviously, and do something that you really like, and that makes you feel good. And, you know, it is a time that you feel lonely. And yeah, definitely creating a community where you can share and where you can hear other people’s stories. This is massively important.
Cheryl:
I’m glad to hear that. Now, what is your favorite arthritis gadget or tool in your toolbox?
Kate:
Hmm… My gloves.
Cheryl:
Gloves, yes.
Kate:
I love my gloves.
Cheryl:
Compression gloves for the win.
Kate:
Yeah, that’s really good. And, yeah, what else? Yeah, my meditation.
Cheryl:
Yeah. That’s primary. And then, this doesn’t have to be about arthritis. But what’s something that’s bringing you joy right now?
Kate:
What’s bringing me joy. So, I’m going to start a new course in a actually couple of weeks. So, I’m gonna do a nutrition school.
Cheryl:
Ooh!
Kate:
So, that is bringing me a lot of joy. It’s something that I’ve always been interested in, because it’s kind of the science behind food. And now, even more, like, it’s very interesting for me to understand how nutrition can help with health. So, I’m gonna start that. And it’s also about giving time for myself, for my own interests, and for hobbies. And yeah, so that right now is, yeah.
Cheryl:
Having a sense of purpose, something to learn. That’s so key. And do you have a favorite book, or show, or movie you’ve read or watched recently?
Kate:
I’m reading the ‘Brain Changer’, by Felice Jacka, I think, yeah. So, she’s a professor in Australia. And it’s basically about her research on how foods affects not only physical health, but mental health as well. And it’s super interesting. Because I was actually listening to a podcast of The Doctor’s Kitchen.
Cheryl:
Oh, yes. I’ve heard of that.
Kate:
Yeah. Yeah. He’s a general practitioner in the UK. And in the years, he realized how food is important for health. So, he had Felice Jacka as a guest on the podcast. And so, she was explaining, you know, her research and everything. And it was like, very interesting. And it’s not like heavy reading, it’s quite light. Like, she writes really well. And in a very, you know, she explains well, and is quite, like, everybody can understand. I don’t have a science background. So, it was just very fascinating about how research is done and how they have data and how all the variables can change certain outcomes. So, yeah, that was, yeah, definitely is a good one.
Cheryl:
That’s awesome. And then, okay, back to the arthritis topic, too. But I mean, not related to, but this is a hard one to answer. So, it’s very broad. But what does it mean, for you, what does it mean to live a good life with rheumatic disease? Well, I know. What’s the meaning of life, while you’re at it?
Kate:
Ooh. I think having a good balance. So, again, I said this already. So, changing my priorities and thinking about myself more. Being more compassionate for myself. Being, well, actually being — I’ve never been compassionate or kind to myself. It was being actually — learn how to be compassionate and how to be kind. And I’ve actually learned so much. And it gave me the opportunity to learn different things, and to be interested, and be curious in new things. So, yeah, I think, yeah, living with arthritis means always be curious, you know, do your research. But make sure you have good research.
Cheryl:
Be — oh, I’m trying, I’m condensing this. I’m like, be compassionately curious, curious and compassionate. I love, I love that. Yeah, I thought I was self-compassionate before I learned — I was like, why is everyone talking about self-compassion? Like, it’s this new thing, like, all you have to do is just love yourself or whatever. But I’m like, you can love yourself without being like, compassionate to yourself on a minute-by-minute basis, right? Like, I had good self-esteem. But I realized I had this running commentary in my head of like, ‘That’s not good enough’, you know, and that’s totally from my own self-criticism. It’s not from anything in my childhood or anything, because I was always given, like, so much encouragement and stuff. But anyway, it’s just been really interesting to be like, you know what, I’m teaching this to my son as well. Like, is there a different way of looking at that? Not saying like, I’m right, and you’re wrong, but like, you know, I hope he’s okay with this being out there, but I’ll think later if I’m going to delete it. But he said — I was coaching his soccer team. And on Saturday, it was really hot, unusually hot here, and it was smoky. So, it was pretty miserable. And was a 12 o’clock noon game. I’m sitting there with my rain umbrella, providing shade to myself. And then we’re, we were winning three to two, and then we retire when the other teams scored. And he goes, “We have to win. If we don’t win, all of this suffering in this sun will be for nothing.” I was like, he said the quiet part out loud. Like, I’m sure many of us were thinking that. But also, is there a different way of looking at it, you know? It was just really funny. But I mean, the self-compassion —
Kate:
So funny.
Cheryl:
Yeah. And we did end up winning. But then, if we had lost, it probably would have been like, you know, a different story. But, you know, I see in his self-assessment again, like we talked earlier in the groups or in social settings, you can see other people’s, you know, their self-assessment, their self-compassion, or lack thereof, easier than you can see it in yourself. And you know, saying, “Oh, you know, I hear you saying that you are terrible at soccer because you missed one tackle, you know. Is there another way of looking at that, missing one tackle?” you know, trying to say, and it actually goes better when — I mean, I’m not saying I’m an amazing — I didn’t necessarily get through to him. But in the case, there’s been cases where it’s like, we’re very hard on ourselves, you know? And just thinking, is there a different way of looking at it is helpful. So.
Kate:
Yeah, it’s very easy to beat yourself up. And yeah, we just, I think, living with arthritis means, you know, letting it go, and just be kind to yourself, and taking moments for yourself. And if you — you don’t always have to go, go, go, go. There are times where you can, it’s fine to stay in bed all day, and just be, and watch silly stuff on Netflix. That is absolutely fine.
Cheryl:
Oh, yeah. I just binged Severance, the show on Apple TV+. It’s really good. It’s so good. And yeah, I was like, I deserve this. I deserve this break. But thank you so much. Is there anything else you would want to share before we complete this wrapping up?
Kate:
Um, no. I think, no, it was amazing. Yeah. Yeah, it was really good to be able to share my story. Yeah.
Cheryl:
Thank you so much. And I was thinking like, if I renamed the podcast, it would be like Arthritis Life Stories, you know? Because it’s like, that is kind of what we’re doing, right? Where we are, you know, sharing people’s life stories. And then I’m like, sprinkling in little pieces of wisdom or attempting to. And where can people find you online if they want to follow up and ask you about, maybe there’s a chef listening who’s like, “Oh, how does she do it?”
Kate:
Yeah. So, again, as I said, I didn’t have social media for a few years, but just recently, literally, two weeks ago, I just had to create this profile on Instagram, which is called @ArthritisChef. And it is, again, just because I realized how important it is to share because it was so helpful for me. I just wanted to share my story. And hopefully, I’m setting up a blog as well, which is going to be connected to the profile, and just kind of sharing recipes, tips. And also like, since I’m going to do this nutrition course, hopefully, I’m going to learn, you know, very useful and interesting things. Yeah, @ArthritisChef on Instagram, from there.
Cheryl:
I love your — I mean, of course, I’m biased, because it’s like a similar graphic style to mine. But I love the logo, Kate Personal Chef. It’s so cute.
Kate:
Yeah, and my partner, he’s a professional photographer.
Cheryl:
I was gonna say, okay, who takes your photos, because this is magazine worthy. Yeah, you guys have to watch —
Kate:
Yeah, I’m so lucky.
Cheryl:
Yeah, so it’s personalchefkate.wordpress.com. So, I’m gonna put that on there too.
Kate:
Yeah, I’m gonna do a new — I’m gonna show it. So, this is — so yeah, all the images from there are from my partner.
Cheryl:
Oh, my gosh, you make me want to eat vegetables, which is hard to do because I am very like, I have a protein and carb kind of constant cravings for protein and carbs. Not as much for like, nutrients. But hey, you just got to hide the vegetables in the carbs and then that’s good. Oh, my gosh, is that a meringue? Okay, I’m going to stop looking at this because we got to wrap it up. But thank you so, so much. Oh, are your — your headphones lost power? We talked for so long. Oh, I’m here are you still here?
Kate:
Sorry, can you hear me?
Cheryl:
I can hear you. Yeah.
Kate:
Sorry, my headphones, I think, have died.
Cheryl:
Oh, that’s okay.
Kate:
Oh, okay, I’m back. Sorry about that.
Cheryl:
Nice. Okay. No, I mean, we were just — I was just saying your website’s amazing. But thank you so much. And yeah, everyone, check out her Instagram at @ArthritisChef. I can’t believe you got that URL or that name? That’s awesome. I would have thought someone else maybe would have snagged it up. And if you have any questions for either of us, you know, you can go ahead and comment on the Instagram show page for this episode or e-mail me at info@myarthritislife.net. But thank you so much, Kate. I really appreciate chatting with you.
Kate:
Goodbye.
Cheryl:
Thanks.
[Ending music]
