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Patient Stories, Podcast

Helen’s “Gloriously Imperfect” Journey with Arthritis

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60 min read
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Summary:

In this episode, Cheryl chats with Helen Mullen, a scientist, executive coach, mother and lifelong learner who shares her “gloriously imperfect” journey with rheumatoid arthritis. 

They share words of wisdom for individuals newly diagnosed with rheumatoid arthritis, emphasizing kindness, self-compassion, and love. Helen also discusses the highlights of her experience in the Rheum to THRIVE program and how it helped her adjust to her new normal. 

Helen also shares how using the PERMA model from positive psychology (Positive emotions, Engagement, Relationships, Meaning & Accomplishment) helps keep her life and condition manageable. She encourages taking it day by day and continuously asking oneself how to love and support oneself through the journey. 

This episode is a great reminder for anyone with chronic illnesses to focus on self-love to navigate the challenges of the condition.

Episode at a glance:

  • Helen’s Journey with Arthritis: Helen describes diagnosis and treatment journey as gloriously imperfect.
  • Self Compassion: Helen and Cheryl discuss how having self-compassion is a great coping mechanism for those with chronic illnesses. 
  • PERMA Model: Cheryl and Helen discuss what the PERMA model is and how it can be helpful in chronic illness management. 
  • Rheum to THRIVE: Cheryl and Helen discuss Helen’s experience with the Rheum to THRIVE support group. 

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Helen Samson Mullen was diagnosed with rheumatoid arthritis at the end of 2018. She’s a mother of two, wife, sister, daughter and friend who has had a lifelong keen interest in health and well-being. She has spent many ‘successful’ years in her brain, earning a degree in physiological sciences, a PhD and post-doc in gastrointestinal research, and gaining years of experience in medical and clinical research before retraining as a professional certified coach. The autoimmune experience landed her squarely in the fullness of her own physiology, which has been rich in invitations to accept, learn, grow, and heal in a body-centered, integrated way. While honored to be a Senior Executive Coach for pLink Leadership, she is also passionate about supporting clients with an autoimmune diagnosis or living with a chronic condition to meet themselves where they are with compassion and care and live fully with their condition. She is the co-creator and co-host of The Autoimmune Campfire podcast. Born and raised in the northeast of England, she now lives in Wilmington, Delaware, with her husband and puppy. She enjoys both the open nest and when her two adult children are home.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty 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:

Full Episode Transcript:

Cheryl Crow: I’m so excited today to have Helen Sampson Mullen with us. Welcome.

[00:00:10] Helen Samuelson: Thank you. So happy to be here. Thank you for hosting.

[00:00:14] Cheryl Crow: Yeah. I’m so happy to have you here, and I would love to just have you let the audience know really quickly, where do you live and what is your relationship to arthritis?

[00:00:24] Helen Samuelson: Yes. I live in Wilmington, Delaware, but as you may be able to hear, I’m actually from the northeast of England originally, but I’ve lived here 28 years now and I have a diagnosis of rheumatoid arthritis.

[00:00:36] Cheryl Crow: Okay. Yeah. And what part of England are you from?

[00:00:40] Helen Samuelson: The Northeast, so Newcastle South Shield.

[00:00:42] Cheryl Crow: Oh, okay.

[00:00:42] Okay. Okay, perfect.

[00:00:43] Helen Samuelson: Just on the end of the Tyne

[00:00:45] Cheryl Crow: Wow. Amazing. That’s great. Okay. Awesome. And what we are gonna delve first into your diagnosis story, which we often call like a saga. And we were just talking before we started recording that. It can be [00:01:00] really hard to summarize this in a few minutes.

[00:01:02] So, but if you could just let everyone know how and when did you get diagnosed?

[00:01:07] Helen Samuelson: Yeah, so I was diagnosed in December 2018. And the diagnosis it took a little while, but I’m really lucky that I have zero positive rheumatoid arthritis. So it, it was quick except that they kept losing my lab results.

[00:01:23] So I felt like I went through, I had a swollen knee in November. I had an emergency appendectomy in August.

[00:01:31] Cheryl Crow: Oh, wow.

[00:01:31] Helen Samuelson: Then a swollen knee and then took blood samples, and then it was by December they decided it was definitely rheumatoid arthritis. And so yeah I had just turned 50.

[00:01:45] I was almost, yeah, just 51. So it was quite a rollercoaster and the rheumatologist that I had to start with was not really a good fit for me. So I felt that impacted how first he wanted to diagnose, he wanted to [00:02:00] give me lots of treatments before the blood samples were in.

[00:02:03] And I felt that I wanted to have an answer as a scientist, I wanted to have all the ducks in a row before I knew what I was diagnosed with. So there was a little bit of friction there. So I think it was just very confusing at the time.

[00:02:18] Cheryl Crow: Yeah. I mean, I think almost everyone listening probably can relate.

[00:02:23] I mean , it’s not only confusing to not really know exactly that definitive diagnosis at times. But also to be like I have something called rheumatoid arthritis, but it’s like systemic, it’s not just quote unquote the osteoarthritis, like the one associated with aging.

[00:02:38] It’s a different kind and you mentioned that you’re a scientist. I do wanna go on a quick side note ’cause I think this is important to understanding how you were a affected by this. So can you share a little bit of your background?

[00:02:51] Helen Samuelson: So I studied physiology at university, physiological sciences, and then I did a PhD in GI medicine.

[00:02:56] And then I did a postdoc in GI [00:03:00] research. And then I went into, clinical research in pharmaceuticals where I worked on heart disease, migraine, cancer, phase one cancer studies. So I sort of had a big range of different areas of research that I worked on over the course of a career, and I had never really heard of, funnily enough, my PhD was around inflammatory bowel disease, which ulcerative colitis is considered an autoimmune condition.

[00:03:27] Both: Right.

[00:03:28] Helen Samuelson: So fascinating that I hadn’t bumped up against rheumatoid arthritis before.

[00:03:34] So I didn’t really, I had to research it myself. And so it was really only once I got the final diagnosis that I went in and researched rheumatoid arthritis to say, okay, well, so now what do I need to know?

[00:03:49] And then come up with my list of questions from my geeky nerdy perspective of, you know, all of the research background.

[00:03:58] Cheryl Crow: Well, and, but it’s so [00:04:00] helpful to have that ability. In some ways it’s helpful to have the ability to wade through that research, but also can be, this is my observation from running the, educational programs and support groups over the years.

[00:04:10] Sometimes the people that are the deepest in healthcare or in science have almost a harder time sometimes because they, this is just my observation, that they’re just aware on a deeper level of what might be happening cellularly and maybe have more fear about the disease.

[00:04:27] And then also is that because it’s almost, it’s like the Dunning-Kruger curve where you’re like, in the valley of disability you learn more about something and then you become more just it’s more confusing. The more information you learn, the more it’s like unclear where, which way to go.

[00:04:43] Whereas I think people who, anyway, sorry I’m rambling, but yeah, that can be really hard.

[00:04:48] Helen Samuelson: I think I agree. I totally agree. I think it’s one thing to research something out of interest and scientific integrity, but it’s another thing when it’s your body and your perspective. And I [00:05:00] think there were points where I had, I chose to walk away from researching something in more depth.

[00:05:06] And actually once I found the rheumatologist, that was a really good fit for me to actually step back and trust her in some ways versus getting so deep down into things that I would, was almost more anxious and experiencing more side effects because I knew about them versus actually just yes, adjusting the process.

[00:05:29] So it’s a fine balance. I always want to know a bit more, but then I could see where it could sometimes get in my way and fuel anxiety, so.

[00:05:38] Cheryl Crow: Yeah. Yeah. It’s once the idea is planted in your head that this rare thing might happen, even though you like logically know, it’s rare emotionally, it’s hard to convince your brain that it’s rare, right?

[00:05:50] Yes. And so, and you mentioned finding a better fit with a rheumatologist. That’s a really, like an FAQ that I get is people ask like, how do you find that good fit? [00:06:00] Or did it, how did you find your second one?

[00:06:03] Helen Samuelson: Yes. Yeah. Well, the first one, first it was hard to get in with a rheumatologist to start with.

[00:06:07] So my primary care somehow got me in with this first rheumatologist. And the reason, I mean, I’m sure he’s a very good rheumatologist, but he very much was ruling with fear. If you don’t take this now, then and I didn’t feel like I had all the facts, and so it felt like there was some friction there where I didn’t feel heard.

[00:06:28] Subsequently I went to an annual GYN appointment and my doctor there said, you know, actually I am seeing a number of patients who have your condition, who are doing really well, and they’re seeing this person. And so that was the link. And I actually called and got a second opinion there, and I thought, this is where I want to be.

[00:06:49] She listened. She was really supportive. She gave me lots of different options. I felt like she was partnering with me in my health, and [00:07:00] that felt much better than the, you must do this without me understanding the whole picture.

[00:07:07] Cheryl Crow: Yeah, a hundred percent. And it’s a shame the first one didn’t really seem to, I mean, seem to recognize the depth of your own understanding. Having worked in clinical trials, like you clearly have a high threshold for understanding the reasons why. And there are many reasons why he probably wanted you to start taking the medication early in aggressive treatment is associated with better outcomes.

[00:07:29] But if he doesn’t take the time to explain that to you and just shouts it at you as you have to do this no conversation then you know that’s not gonna work. So, I’m glad you got that word of mouth, I mean year 20, 25 and it’s still kind of how I get good recommendations is word of mouth for better or for worse, right?

[00:07:47] Helen Samuelson: Yes. Yeah. And as I was researching more treatment my current rheumatologist encouraged me to get a second opinion. Johns Hopkins, which is an immunology sort of center of [00:08:00] excellence. And I thought, wow, that really speaks volumes to you know, being involved in somebody’s care and saying that, you know, there’s something that you’re asking about that is more research focused and they’re the researchers, why don’t you talk to them?

[00:08:14] Both: Yeah.

[00:08:14] Helen Samuelson: So I think that’s, that really spoke a lot to me about how she was showing up in service of my whole care.

[00:08:21] Cheryl Crow: I love that. Well, it’s so great to hear that you have that good relationship with your rheumatologist. I do too. And people asked me how, and I said, well, I just lucked into it.

[00:08:31] She was the first rheumatologist that my primary care referred me to in 2003. And she, fortunately for me, hasn’t moved and hasn’t left. So I know, I feel like I’m like a, it’s like a unicorn. She’s left her practice and started at different practices a couple times, but she’s still geographically in my area, so I know I’m,

[00:08:51] Helen Samuelson: it is amazing to have incredible practitioners in your sort of circle of excellence.

[00:08:59] Cheryl Crow: Yeah. It’s [00:09:00] really a team. I mean, speaking of that, you know, my next question was gonna be about what has helped you cope with the ups and downs of managing RA? And, you know, we mentioned a little bit of ups and downs maybe of like fears about the treatments, fears about side effects yeah.

[00:09:16] And what in general, what are some of the things that have helped you?

[00:09:19] Helen Samuelson: Yeah, well, so I feel incredibly fortunate that I have a very supportive husband and two really supportive children adult children, you know, in their twenties now. I have a really great friend network that even when I rarely tanked, I would, they would push me around the block in a wheelchair if I couldn’t walk that day.

[00:09:40] I mean, they just really stood by me. So also I think my work, so I don’t work in clinical research anymore. I retrained as a coach and I’m an executive coach and do leadership development. I have an incredible, I work for an incredible organization who are just so supportive [00:10:00] and have been really flexible.

[00:10:01] I mean, I was traveling. Before diagnosis, maybe seven outta nine weeks to do leadership development trainings. Oh. And now I don’t travel at all. I just do coaching from home because the travel was just too much for my body and they have have made space for that. And I’m just really very grateful.

[00:10:20] I also have great practitioners and so, and I also feel very fortunate to work with practitioners that maybe don’t, aren’t sort of like your, so I, you know, I have a rheumatologist and I have a primary care physician who’s phenomenal, who also specializes in integrative medicine. So I have sort of like the MD with a little bit integrative, so I’m, I really don’t take that for granted.

[00:10:46] I work with a PT who does myofascial release, and that has been huge. So Nice. I work with a therapist as well as, and a coach. And so I have this sort of, I want to say knights at the round [00:11:00] table, but I want a female version of that. I don’t know. Yeah. I don’t know how to say that, but matriarchs of the, I don’t know.

[00:11:08] But anyway, I feel like I have

[00:11:10] Cheryl Crow: queens of the round table.

[00:11:12] Helen Samuelson: Yes, exactly. An incredible support system. And so I think that really helps. And then I have practices that help me. I have dry eye due to the RA and so every night I have the broder eye mask on. And so, you know, while I have that on, I listen to meditation, so I meditate, I walk as much as I possibly can in between work commitments and functional commit, you know, functional issues.

[00:11:39] I’ve started a strength training practice, so I’m working with a PT so that I can grow some strength. ’cause I think I just got weaker and weaker since my diagnosis. ’cause I was just in pain and now this is really helping me. Yeah, so I mean, I think those are the things that off the top of my head oh. Nourishment. I try and eat [00:12:00] lots of vegetables, fruit you know, not processed food. I mean, you know, within reason and gloriously imperfect, but

[00:12:09] Cheryl Crow: I love that. Oh, that might be title of episode, gloriously imperfect.

[00:12:13] Helen Samuelson: Yeah. It’s just, it is what it is. You know, there’s a few things that slip in here and there, but in general, I’m really cognizant about this vehicle that I’m in right now struggles with inflammation.

[00:12:26] So how do I, it’s almost like seeing how can I fuel my future self? And that’s, you know, is it movement? Is it mindfulness? Is it, you know, sort of like a spiritual connection. Like I love to be in nature and at the beach. And also, you know, what I put in my body?

[00:12:47] Cheryl Crow: Yeah. Yeah. And you have animal therapy with your dog.

[00:12:52] Helen Samuelson: Not formal therapy, but yeah, she’s asleep under my desk. But yeah, I have the cutest little mini golden doodle

[00:12:58] Cheryl Crow: you really do.

[00:12:58] Helen Samuelson: She’s [00:13:00] feisty as all get out, and she is just an absolute love. I mean, I’m days when I’m really, if I have a flare and I’m off my feet, she’ll just jump on the couch and she just lays on my heart.

[00:13:11] Oh. It’s as if she just, she gets it. And so complete unconditional love from a little , we call her little miss fluffy knickers. She’s just very fluffy,

[00:13:22] Cheryl Crow: fluffy knickers. That’s so per, it’s perfectly British. Wait, is your spouse British too, or no?

[00:13:26] Helen Samuelson: No, no.

[00:13:27] Cheryl Crow: Oh, okay. I just wondering.

[00:13:27] Helen Samuelson: He’s from Delaware.

[00:13:29] Cheryl Crow: Oh, okay. That’s awesome. Sorry, I just, I had to mention the dog because Yeah, I was, we have a lot of dog lovers and just animal lovers in the community. No, but I think it’s just I think we all, when we’re overwhelmed in the, you know, just newly diagnosed time, want someone to just tell us this is the one thing you have to do.

[00:13:47] You have either you have to meditate or you have to do strengthening or, but it’s really like a smorgasbord like you just described. It’s a lot of little things that add up to helping you have a sense of thriving and a [00:14:00] sense of being able to be like you said, gloriously imperfect.

[00:14:03] Like maybe your body is itself not acting exactly perfectly with the inflammation, but you can help control what you can, as my old soccer coach used to say, control the controllable. You know?

[00:14:16] Helen Samuelson: Exactly. And I think at first it felt really, I mean, I think I genuinely had a pretty healthy existence before.

[00:14:21] So I think I was a little disappointed that this happened. But you know, it’s well you know what this is, you know, there is no fault in this. It’s just, it just is. And also how do you make the best of it? But I recently got an aura ring and I’m noticing it’s quite helpful to see where some things are stressful and you know, where I have recovery, that it’s really validating, oh, okay, that really was good recovery for me, or that really was better piecing for me, or, Ooh, that was actually quite stressful even though I didn’t think it was, how do I build a more [00:15:00] recovery?

[00:15:00] And so I think that’s quite, you know, sometimes some data has helped me as well, just because, yeah. To get out of the stories in my head. Yeah. Because the brain can make so many of them.

[00:15:14] Cheryl Crow: Oh my gosh, no. And I think it’s, we have so few objective markers of to show what’s going on in our bodies.

[00:15:21] You know, obviously we have blood work, but that’s very imperfect. And so I’ve been hearing more about people’s positive experiences, like with the Aura Ring or other sort of technological, digital, you know, trackers what’s the other one? I’ll have to look it up. I’ll put, I think it’s visible.

[00:15:36] Helen Samuelson: It’s called visible. So I just got this, my birthday, the AA ring and as soon as I bought the AA ring, the visible stuff kept coming up. Yeah. And I was like, ah, I should have got that. I mean, I’m sure they’re all tools in the toolbox. What’s interesting is that the AA ring is all very much about health, but I was able to go in and put my diagnosis in and so now that it bears that in mind with my data [00:16:00] somehow.

[00:16:00] The other thing I use and this is all privileged ’cause these are all expensive devices.

[00:16:05] The other thing I use is the Apollo. It’s the Apollo. It’s a vagus nerve stimulator. So I have that either on my ankle, on my wrist, and it gives you different vibes that kind of help you recover or go into sleep or unwind or even energize when I feel a little flat.

[00:16:22] Cheryl Crow: Wow.

[00:16:22] Helen Samuelson: And so with that newest research about those implanted vagus nerve stimulators I want one of those excited about yeah. Yeah. I actually pulled my Apollo out and I’m wearing it even more so now, because now there’s evidence that it’s, I mean, that, the research on that was pretty incredible.

[00:16:39] Yep. Like 60 efficacy.

[00:16:42] Cheryl Crow: Yeah. Between that and CAR T-cell therapy, this is looking like a really good knock on wood, but this is looking like a really good new era to use Taylor Swift language, a new era in rheumatology, which is for specifically rheumatoid arthritis in similar conditions.

[00:16:58] And yeah. And later this month I’ll be going [00:17:00] to the American College of Rheumatology Conference. Oh, the third one is the GLP ones. And they’re somehow having an effect on inflammatory arthritis beyond what they would expect from just the positive benefits of weight management if you are overweight and have inflammatory arthritis.

[00:17:15] So. Anyway, so stay tuned. Stay tuned for more. But that’s, yeah, that’s wonderful to hear. Like the, all the tools in your toolbox. And the other thing I wanted to ask you about because you’ve given me per, I don’t, I always keep everyone who’s taken like the Rheum to Thrive program and the support groups.

[00:17:30] It’s all, I keep it confidential unless the person gives me permission to talk about probably what you have. So I wanted to hear a little bit more about. You know, now that you’ve had a little time to digest the experience, like your experience with the Rheum to Thrive program. What were some of the things that were most helpful about that for you?

[00:17:48] Helen Samuelson: Oh goodness. How long do you have? Everything? Absolutely everything. Well, so first I would say, actually, one of the things I didn’t say in my coping toolkit was early on somebody introduced me to [00:18:00] somebody who had RA for 16 years or so, and they said, get involved in the Arthritis Foundation. And I had not wanted to because I just didn’t really want to own the diagnosis or I just, I don’t know what it was.

[00:18:11] I just was having a problem with that. But I did because I really respected her. And one of the webinars I went to was you and I thought, look at her girl. She is incredible. And I learned so much from that webinar. So I started then following you, and then I was like. Oh my goodness. She has a course. So I signed up and I, you know, I’m a researcher so I, I have researched a ton, but I love the way that you present the data.

[00:18:39] It’s so, there’s, so first I think the most, I think it’s this, one of the secret sources is the community that you curate there. So you are one of several in a cohort, which is lovely. I love the way that you give the videos in events so that you can really get the meat out of the [00:19:00] substance of each particular piece of the Thrive model.

[00:19:03] And then come to have a discussion about it. ’cause I think that’s where the learning lands. So I love the way you’ve structured it. I love that it’s so evidence-based. I love that you bring everybody’s voices in and if somebody’s got a particular perspective that’s valuable, you share that pers you know, sort of, there’s onward sharing from the discussion.

[00:19:23] So it’s an evolving really, and it’s such a safe space. And as I was saying to you before we started recording, you know, your superpower is empathy and the way that you facilitate with just such respect and perspective is it was really a beautiful experience. So I would highly recommend it to anybody who’s on the fence.

[00:19:46] Dive right in.

[00:19:48] Cheryl Crow: Yeah, that’s so kind of, yeah. I mean, everyone’s feedback is amazing and helpful. And I do change the program at times based on, you know, constructive criticism stuff. But having someone like you who [00:20:00] really understands the research and evidence so much, like how, you know, say that means a lot.

[00:20:05] And yeah, I do. I it was, you know, initially I was thinking I would work one-on-one with people, but I was honestly doing a group partly because I just configured I could help more people at once. Not realizing how I should have known as an OT, but anyway, how therapeutic the process is of not just getting your own questions answered, but being able to process the material and the tools to thrive and the things we’re learning about and the questions we have and the confusions we have and problem solve that together in a group.

[00:20:36] It’s so normalizing, right? Everyone feels like we’re the only one.

[00:20:39] Helen Samuelson: Yes. Yeah. Yeah, that’s exactly it. It was so normalizing because a lot of the time especially I’m kind of, I’ve always moved fast doing lots of things, kind of type A and pacing has been a real struggle for me.

[00:20:55] Cheryl Crow: Me too,

[00:20:56] Helen Samuelson: but the backlash to not pacing has also been a [00:21:00] struggle.

[00:21:00] So, you know, this whole thing where in my family I’ll say, well, I can do that, but not this. Or I can do one thing today or today I can do three things and they’re not used to that. Whereas I was in a community of, wow, one thing that’s great. Good for you. It felt really yes, I’m doing great here, versus comparison with my old self.

[00:21:25] Looked very different versus being in a community of people who are also managing the same thing and going, yeah, I see you. That’s awesome.

[00:21:33] Cheryl Crow: Yeah. Yeah. It’s so funny how often someone in one of the Rheums will say, well, this isn’t that big, but I just wanted to share, and they share this monumental thing.

[00:21:42] I advocated for myself for the first time ever. Yeah. You know, at an appointment or, you know, just, I used one of my tools and I, you know, I was so scared to sign up for an exercise class, but I did it, and I showed up and I couldn’t do the whole class, but I still, you know, was proud of myself for getting there.

[00:21:59] I’m like, [00:22:00] whoa, these are huge. You know? And you’re like, yeah. You look around the Zoom Rheum and you see other people like clapping for you. And yeah, it’s just, it’s so, you know, and you mentioned the Arthritis Foundation. You know, I try to always be fair to be like there are other groups and programs out there too.

[00:22:13] They have some support groups. So usually a monthly thing versus kind of the more intense weekly kind of structure that I have. But, you know, that’s also something, if that’s somewhere that works for your schedule that, you know, look those up. I’ll put a link to those in the chat for sure as well.

[00:22:29] And there’s, you know, the Spondylitis Association of America has some support groups that they, I think run for free ’cause it’s a non, you know, through their nonprofit. And it’s just so great to get help. But I think you touched on something earlier that really resonated, which was you didn’t wanna get involved with Arthritis Foundation because it would mean it was real in some way.

[00:22:48] And I think that’s also existed.

[00:22:51] Helen Samuelson: Yeah, I really resisted it. Yeah. Yeah.

[00:22:54] Cheryl Crow: I wonder, I, this is totally me, armchair psychoanalyzing, but I just had this thought [00:23:00] that around like turning 50 and then getting this diagnosis where you’re kind of in this liminal space where you’re actually still young for what maybe your perception of what osteoarthritis is, but you’re also contending with you know, aging just in normal, quote unquote aging, right? Yeah. And then having this chronic thing on top and not maybe being where you fit in to the community, like arthritis community.

[00:23:22] Helen Samuelson: I mean, I think that, I think I generally have a hard time with the arthritis, and I think we’ve talked about this, where it’s, people go, oh, arthritis, my grandma has that.

[00:23:34] But, you know, rheumatoid arthritis is a systemic inflammatory condition, as you said. I mean, it, in fact it affects your internal organs, it affects your whole system.

[00:23:46] And so it feels I wish that it was, I think we’ve talked about different terminology, right? So Yeah. Rheumatoid autoimmune or rheumatoid inflammatory condition or something is, you know, I mean, I [00:24:00] think that I heard in a podcast somebody say rheumatoid arthritis is more similar to MS than it is to arthritis.

[00:24:09] Cheryl Crow: I think I’ve said that. And it’s more similar to MS or lupus than osteoarthritis. Yeah. And so,

[00:24:13] Helen Samuelson: and people go, oh, now they’re like, oh I get, it’s not just that, you know, you ache a bit at the end of the day. Yeah. It’s so, I feel like it’s a really misunderstood condition. And I think that was hard ’cause I then, it’s like the Arthritis Foundation, maybe it would’ve been better if it was the autoimmune found

[00:24:35] Cheryl Crow: there is actually the Autoimmune Association.

[00:24:38] Helen Samuelson: Yes, I saw that. So I was like I don’t know. But then also there’s, you know, over a hundred autoimmune conditions and there’s no specialty on autoimmune. They’re all dealt with by different people. So it’s conundrum

[00:24:53] Cheryl Crow: challenging. I feel like it’s my destiny to be in like ambiguously named things because it’s like I’m [00:25:00] an occupational therapist.

[00:25:01] Oh, you help people get jobs? No, actually we totally help people do the jobs of daily living. And you’re like, this, that doesn’t, like we need, I need a marketing specialist for everything that I’ve done anyway. But I try to normalize it and remind myself like, so many professions in so many conditions have naming problems like, you know, ophthalmology versus optometry or, you know, physical therapists versus personal trainers.

[00:25:23] You know, there’s so many or physical therapists versus but to get to the specificity of what this podcast is about. Arthritis, even naming it arthritis life, I actually kind of agonized about that. ’cause I’m like, it’s not, it’s really about inflammatory arthritis or autoimmune arthritis.

[00:25:36] But most people don’t use that like nomenclature. Like they use the diagnosis that they use the language of the diagnosis they have, which is rheumatoid arthritis, psoriatic arthritis. Yeah. Ankylosing spondylitis or non axial, non-radiographic axial spondyloarthritis or IBD with arthritis as a side effect of, or a symptom or, and so, so maybe in some of your leadership training, [00:26:00] you’ll come across a marketing person who can help us sort through all this maybe, but Yeah.

[00:26:06] But I think that does that, the feeling misunderstood about it and feeling like it’s minimized is part of what we need to cope with, right? And that maybe if, even if it was named perfectly, even if it was named, you know, a name that everyone automatically understood on some cognitive level, we’d still have to contend with the emotion, sense of maybe people not getting it, they don’t get it till they get it kind of thing.

[00:26:28] You know, I think parenting for me has been a good analogy for that. And even so, I only know how to parent, I only know the experience of parenting of my own one child. But it’s like you could, you know, I worked as a pediatric occupational therapist. Now I cringe at some of the stuff I said to people with kids before, you know, I think you should do this, or whatever.

[00:26:45] And it’s you don’t get, you don’t really understand what it feels like to parent until you’ve done it. It’s kind of the same right with our conditions. But yeah. One of the other things I wanna make sure to get to is before we met today, you know, I always ask people, what is the thing [00:27:00] you’re most interested in chatting about?

[00:27:01] Or passion? You know, one of the things you’re passionate about and you had said, and I just love how you word things. I love how your brain works. Thriving with RA is a passion for me that I fail daily in and is definitely aspirational on many days. Yes. Which I’m like, where’s the click? The relate button clicked yes.

[00:27:20] And I think that I would just love to hear more about how do you conceptualize this whole idea of thriving? Because it is aspirational some days, you know?

[00:27:30] Helen Samuelson: It is at times it is. I mean when I go back to the positive psychology training that I have. You know, the idea is that if we have wellbeing and resiliency, we’re able to flourish.

[00:27:40] Or you could say thrive, right? And so also how do you have wellbeing with a chronic illness? Or it takes me back to the positive psychology of the PERMA model, which is, you know, there’s five buckets that you fill to fill your wellbeing, and then how do you build your resiliency, you know, that sort of [00:28:00] fuels your resiliency.

[00:28:01] So I think about this all the time ’cause it’s what we use in our practice, but, perma is it comes from Martin Seligman’s theory, from the book Flourish. But it’s not just his theory. He takes it from a whole series of positive psychologists, all of their work together.

[00:28:16] But it means that if you invest in, you have something in each of the buckets of the following. So, P is positive emotion. E is engagement. And that’s about engagement within, it’s like when you find yourself in flow and for some people that might be painting or knitting or running or being in nature, but where you lose track of time.

[00:28:37] R is relationship to others. M is meaning and purpose. See, and more recently in tomorrow mind they wrote about mattering. And I think that’s one of the things, when you have a chronic condition and you need to manage your energy and not go to so many things, suddenly you can drop off people’s radars and feel like you don’t matter.

[00:28:57] Right. Yeah. Achievement. [00:29:00] So we still want to get some things done. So the idea is everybody’s equation of those five things may look different at their best, but we need to invest in each one. Each one needs to have something in that bucket. So when I’m feeling like my wellbeing is a little bit, I look, where am I?

[00:29:19] Where’s my pe? Usually for me what’s gone is engagement. I’ve not taken some time out to just be or get in the flow or do something creative. I’ve just been we have an art center in our local community and I’ve been doing different classes with different art things and then practicing them at the weekend and that get gives me my E right?

[00:29:40] So, so I just notice which ones fall off or are, have I not seen my people? Right. You know, the people who really fill me up. And so, that structure really helps me from a scientific perspective. I just love having, you know, an equation to play with. And then also resiliency. Adam Grant talks [00:30:00] about, it’s not just the ability to bend without breaking, but it’s the speed and strength of your return.

[00:30:07] Cheryl Crow: Wow, I hadn’t heard that. That’s, I love that.

[00:30:10] Helen Samuelson: Yeah. So I, you know, so resilience is the speed and strength of your return from adversity. And so I often think about how do I chart myself back to where I want to be? And also that bigger question of who do I want to be in this? Because at times when I’m in, really, if I’m in a really bad flare and I am in eight out of 10 pain and I can’t move and my dog is crying ’cause she wants to go for a walk and nobody else is home and I am, I just feel so hopeless. It’s okay. So what is possible here? Well, I could let her in the garden and I can, you know, like how do I, you know, where is my resiliency in this moment and how do I take care of myself so I have that strength [00:31:00] and speed of return.

[00:31:01] Because if I just keep going at things at the speed that I was doing before this, then I tend to hurt myself more. So pacing becomes really important. Kindness. I think the biggest thing in this one of my work colleagues when I was diagnosed, said have you done the self-compassion workbook?

[00:31:23] She said, let’s do it together. And we did it, you know, 24 weeks of the Kristin Neff and Christopher Gerner’s self-compassion practices. And that has been huge. Just to be kind to myself, to realize I’m not alone and to notice, you know, some mindfulness, self kindness and common humanity of the of self-compassion. And that has been huge.

[00:31:45] Cheryl Crow: I love that. And I’m having to be self-compassionate to myself that I didn’t, I immediately had a negative thought. ’cause I bought that book and I have it physically near me, but it has not gotten into my brain through osmosis. I haven’t [00:32:00] actually read it.

[00:32:01] So I’m like oh, how would you not read it? You’re so interested in this. But I’m like, no that’s part of it. You gotta just have self-compassion and say, you know, I can get to it. I can control getting to it.

[00:32:11] Helen Samuelson: So, you know, what helped me was that she had gone through the whole book.

[00:32:15] I think she had done the original, I think there’s a course.

[00:32:18] And so we met every week and went through a chapter a week. And then I did the same with my sister and we spent 24 weeks and we went through every week was a different chapter, and so I went through it twice.

[00:32:32] Cheryl Crow: Wow. And I think I need to, I love that.

[00:32:34] Yeah. You should just be on a constant loop. No, that’s great. And I think that’s one thing that I’ve discovered through even doing my, it sounds kind of maybe, I don’t know if this sounds like self-centered or something, or self-promotional, but I’m like even doing my own, each time I facilitate those Rheum to Thrive program with the Thrive framework, I, it’s important to review things.

[00:32:54] Helen Samuelson: Yes.

[00:32:54] Cheryl Crow: It’s important to and process them each new, per each new person, or in my case group that I’m processing it [00:33:00] with also sheds light on the material in a different way. And I love, I, first of all, I fell in love with Dr. Marty Sullivan. I don’t know him in person. His work in like the mid two thousands.

[00:33:11] It just was such a great hook to say, well, the whole field of psychology is centered at that time around pathology. What goes wrong in the human mind, but what about post-traumatic resilience, why is it that some people who you would expect would be really, have difficulty functioning in life and because of their terrible, you know, circumstances are flourishing and why don’t we study that?

[00:33:33] Yeah. And that’s just such a great, yeah. I mean, it’s such a great applicability. I don’t think initially developed for chronic illness, but it is, you know, my it is applicable to rheumatoid arthritis and autoimmunity. Like why is it that some people flourish with a condition and I think a key to it for me in my personal life that relates to like acceptance and commitment therapy and in the groups I’ve done too, has been that example that you gave with the dog of not asking yourself [00:34:00] what do what.

[00:34:02] Do I wish I could do right now. But saying, what can I do? Opening yourself up to what’s possible right now and not putting all your hopes on a future that might not ever come when you quote unquote get back to normal or get back to your healthy pre-diagnosis self.

[00:34:20] But is it, isn’t it hard to let go of that hope sometimes though, or expectation?

[00:34:25] Helen Samuelson: Yeah, for sure. And I think that for a long time, and I think maybe even still, I’m grieving what I thought my third chapter would be. Right. So I’m 58 now. What I thought my third chapter would be is different than I had always been planning for. Right. And all of a sudden it could be very different.

[00:34:46] And it’s you know, as my son is getting married next year and I’m thinking, okay, so strengths training so that, you know, in future I’d be able to hold any babies that are gonna come this way. No, no pressure to them, [00:35:00] but, you know, I know that they want to have a family at some point and, you know, thinking about really linking what’s important and what I can influence because it’s, there are so many concerns that can swamp out any thought of influence.

[00:35:17] I think that’s the thing with rheumatoid arthritis is it’s just so I can feel great one day and the next day I can start to get outta bed and realize I can’t stand on one foot.

[00:35:30] Cheryl Crow: Yeah.

[00:35:31] Helen Samuelson: And it’s confusing for those around you as well. ’cause they’re like, well, you walked three miles yesterday, why can’t you stand today?

[00:35:38] Well, I don’t know, you know, well, when will you know, do you wanna walk tomorrow? You know, with friends? Well if I’m gonna cancel that today, do you wanna do it tomorrow? I don’t know. I don’t know if I’ll be able to do it. I would like to, but I don’t know. And so I do a lot of, I got certified as a facilitator in Brene Brown’s debt to lead curriculum.

[00:35:59] [00:36:00] And I still work with that in my professional life. And one of the things she defines vulnerability is the emotion you feel when there’s uncertainty risk and emotional exposure is vulnerability. So I feel like rheumatoid arthritis is like living in vulnerability because there’s uncertainty, risk and emotional exposure all the time because if your body’s not working well now you just have to adjust your whole day.

[00:36:26] And that can be challenging to those around you. ’cause you know, when somebody says, Hey, would you like to come for dinner next week? I would love to. And. Sometimes it doesn’t happen. And I think if you’re not in this world, you don’t understand. They’re just like, oh, she’s flaky. I don’t know what story they make up, but sometimes it feels like you miss a lot and that’s hard.

[00:36:52] Cheryl Crow: Yeah. And I always, my workaround for this is typically to say Hey, let’s make a plan A and a plan B. Like [00:37:00] I want my brain wants to go and, but my body might not allow me to go. So, but it’s very, it’s a lot of emotional and executive functioning load to then be like, okay, so then I’m gonna make a plan B, but what if I can’t make the plan B and this person ends up perceiving that you’re flaky when you’re actually at the whims of some, it’s like the weather. It’s just there’s some part of it that’s gonna be out of your control. And I think, yeah, you’ve certainly expressed as a really core part of why this is so hard outside of the actual symptoms, like outside of the fact that the reason you have to say no is the flare up, the feel, and that’s not comfortable either the actual physical feeling.

[00:37:43] Helen Samuelson: Yeah, no, exactly. And I think that’s the thing with the wellbeing and the thriving and the flourishing and the resiliency is when I’m in pain, I am, often it’s the hardest for me to reach into being values aligned. It’s as if I lose, it’s as if the light goes out on [00:38:00] those. And so then I think being able to lean into my values really helps me chart my course pain seems to dull all of those.

[00:38:11] And then I feel like I’m not being the person I want to be. Do you see what I mean?

[00:38:16] Cheryl Crow: Oh, a hundred percent. Yeah for me, it’s more common in my in my personal life, that anxiety is the thing that kind of makes me, it makes it decreases my capacity to be like the person I wanna be.

[00:38:31] ’cause I just kind of get irritable. I don’t know if you get irritable or, you know, and I think it’s, yeah, there’s just no way of getting around it. It just does, this is why people are like, oh, you have arthritis, but it doesn’t have you. Or you know, you’re conquering it. It’s well it is hard.

[00:38:46] I think it’s important to say that there are days when I don’t, thrive, they’re there and that’s okay. That or that to me that is part, I try to think of like Dr. Russ Harris in my head, my personal friend in my head [00:39:00] you know, being like a full life will have the full range of human emotions.

[00:39:04] You don’t get to just pick and choose. You don’t just get to be like, I’m only gonna feel happy and yes, a hundred percent healthy and able-bodied all the time. Maybe some people are outliers and they get to have that, but most don’t. Yeah. And that’s, you know, that’s life. And we’re still, we still have possibilities.

[00:39:21] I tried to remind myself, you know, and that’s maybe part of thriving is, I mean, it’s all, you know, at some point, what’s the word I was gonna say, subjective, but it’s all like how you define the word, but it is being able to open up to what is in the moment versus what you wish it was.

[00:39:40] Helen Samuelson: You know, I do.

[00:39:40] I agree. I think it’s about growing and I do think it’s similar to flourishing. I don’t know if I could say what the difference is really, but it, and it’s also about being values aligned and moving towards, you know, sort of intentionally creating the life you want. And I think it’s important to [00:40:00] have that hope.

[00:40:01] I was just reflecting on the loss of Dam Jane Goodall, which was really devastating. And I was lucky enough to see her speak live in New York years ago, and she was just, I was mesmerized. But, you know, her whole thing is what, you know, when they asked what is your, what was your, the meaning for your life?

[00:40:21] And she said, hope. And I think sometimes that hope is what I’m trying to lean into because at times it goes a little dark. When I’m in pain, I lose the hope and then the P, you know, as the pain recedes, I can kind of get back into the, and I’m like back, you know?

[00:40:40] Cheryl Crow: Yeah. No, that’s so beautiful. And I know it’s interesting ’cause I feel like I had heard interviews with her, you know, and everything, but I don’t think I deeply kind of processed her work until this last week. And she said something that was really interesting about, like everyone says, think [00:41:00] global, act local. But she was saying sometimes when you think global, it’s too overwhelming. It’s actually because you just feel it’s only rational to feel despair when you think global ’cause there’s so much going wrong.

[00:41:14] And she was kind of recommending that people think actually local first, you know, think of what and think in our case we can say hyperlocal, you know, what can I do today? Like you mentioned the dog situation. Yeah. You know what, that’s what I think that’s all we can do. That’s all we know is for sure is the present moment, you know?

[00:41:36] Helen Samuelson: I agree. And I think the other thing is, she says is everything that you do may have an unintended consequence. So be really intentional about what you’re doing, even if it’s not even your advocacy or, you know, activism. It’s how are you using the resources that may impact our planet? You know, what are the choices you’re [00:42:00] making?

[00:42:00] I think it can get as small as that, that we’re making an impact. And also she said her favorite animal is dogs because of the unconditional love.

[00:42:07] Cheryl Crow: I loved that. Oh, that’s so funny. I know you’re like somebody who is, you know, known for being the gorilla person is like, dogs are the best

[00:42:22] Helen Samuelson: I know.

[00:42:22] And because she said chimpanzees, what was it? She said chimpanzees. She, you know, have personalities and some of them she really loved and some she didn’t like as much. Just like humans, but dogs. They’re all love.

[00:42:35] Cheryl Crow: Yeah, that’s, I know, that’s so, so sweet. Well, the last question I had for you before we go to the rapid fire questions is you know, I wanna start asking this question to everyone ’cause this is what we all kind of wonder when we’re first diagnosed, which is, what is a day in your life like with your condition and just your overall life?

[00:42:57] Helen Samuelson: Yeah. So I think it [00:43:00] can be very different. Like I said, sometimes I can just wake up and bound outta bed and then it’s, you know, whatever I had planned. And I’m a big planner, so I love that. I luckily work from home, so, a day in the life would be, I would get up and walk the dog with my husband and have breakfast and then have day of client coaching sessions or perhaps meetings.

[00:43:23] Take lunch on the screen porch, look at some nature you know, an afternoon, you know, writing things up or more clients and then evening dinner with family and at home. So, trying to build in some, you know, I actually do yoga twice a week with one of my work colleagues. We meet on Zoom.

[00:43:41] Do a yoga with adrienne together.

[00:43:43] Cheryl Crow: And and then I’ll put a link to yoga with Adrienne in the show notes because

[00:43:48] Helen Samuelson: she is a self-compassion intervention. She’s amazing. So we both have joined her membership, but Adrienne’s so generous that she gives so many practices on YouTube for free.

[00:43:58] So Yes,

[00:43:59] Cheryl Crow: she [00:44:00] really does. Yeah.

[00:44:00] Helen Samuelson: She’s so generous. And then my strength training as well, sort of build that in twice a week as well. And then I walk with I’m very lucky. I have a couple like three friends in my neighborhood who will walk when we can’t, you know, sort of get out and walk laps with our dogs or just with each other.

[00:44:18] And then some socializing in the evenings. So if, you know, not as much as when the kids were in school where it felt like there was something every night, whether it was a six.

[00:44:26] Cheryl Crow: Yeah, yeah.

[00:44:27] Helen Samuelson: Something like that. No, you know, these are sort of super intentional things. My husband’s a big extrovert, so, and he’s a big sports fan, so there’s usually some sports watching or something.

[00:44:36] And I love to read. And when I don’t have function, it’s really about slowing down and really being intentional about what to do with my, what to do with the energy I have and really listen in, which is hard for me ’cause I just like to go.

[00:44:55] Cheryl Crow: Yeah. Right. Well, and I think, I mean, again, if I could project my myself [00:45:00] onto you, but it’s also, I realized when I started discovering like somatic work, I’m like, you know, my therapist was like, what does that, where do you feel that in your body?

[00:45:07] And I was like, my brain. ’cause that’s where my feelings are. She’s no. Well, okay. But like, where literally, I’m like literally my brain. Like I, like it was, took me so long to figure out what my body was feeling because I had, as a coping mechanism to allow me to go, I had completely disassociated from my body and unless the pain was really bad and I just couldn’t avoid it.

[00:45:30] But I think that becoming, I forget where I was initially going with this sentence, but yeah, just I think being able to pay attention to your body and that it allows you to help pace a little bit better. Because before I might pace just out of principle, but I wouldn’t really be feeling why I was doing it, you know?

[00:45:49] Helen Samuelson: Yes. Oh, for sure.

[00:45:51] Cheryl Crow: Oh, yes. I know you like, just as my other therapist said because I eventually went to one that was so my [00:46:00] female therapist, she was a general anxiety therapist, was so, so, so helpful. And then I ended up going to my current therapist because of the claustrophobia and like specific phobia anxiety part was the part that we, she, I needed somebody who really specialized in that because that was not getting kind of any, that wasn’t getting a lot better.

[00:46:18] I mean, better is like a relative term, but, you know, point being and he is you know, oh my God. Sorry. My brain fog today. I’m like, I went dancing last night, speaking of values of line activity, and I knew this was gonna happen to today. It was like I traded off one of the things that I didn’t get my normal amount of sleep last night, but it was a special open grand opening of this ballroom in Seattle that had been renovated.

[00:46:40] And I was so, and I’m like, I know tomorrow my brain’s gonna be a little bit weird. Why was I talking about, okay. I can’t remember. When I look at the transcript later, I’ll see a connection to why I was talking about, but but anyway. Yeah. Hard, you were talking about what day in your life is kind of Yeah.

[00:46:53] Hard and it’s, that is so, that is such a great response that it’s, first of all, that whole premise of the question is [00:47:00] really hard because there is there’s like a good day, a tough day, and then there’s maybe the medium day and it’s like you don’t, every day is like playing roulette, like which one you’re gonna get.

[00:47:11] Helen Samuelson: Well, yes, and especially as somebody who’s a planner. There’s the day I planned and this is the day I get, and I could even start a day and be pretty good till lunchtime. And then I think the brain, I hate the, you are so right. The brain fog is brutal at times. And actually the fatigue, which is something that, you know so somebody outside of the RA community wouldn’t get, but how sometimes I wake up in the morning and I’m like, oh, I feel like I haven’t gone to sleep yet.

[00:47:45] I, what is the, you know, whereas I always used to wake up refreshed. So I think there’s, there are lots of things that we deal with, and I think that is sometimes the challenge of these invert commas, invisible illnesses. I mean, people can [00:48:00] look at my hands and see the damage on my hands, but they don’t realize the other things that I, or if I’m limping, they don’t realize the other things that you’re managing a lot with an autoimmune condition.

[00:48:11] Cheryl Crow: A hundred percent. And yeah, I mean, the only thing we can, that I can think of to do is just keep telling our stories, keep, you know, sharing about it because it is not intuitive to just kind of grasp. I think our culture has a lot of like messages that I used to subscribe to before I became chronically lll like just push through no, I’ll sleep when I’m dead kind of thing.

[00:48:33] It’s you know, that’s not actually true. Right. Even the most, you know, able-bodied person still needs sleep every night like we do. We have limits to our bodies, you know, whether we like to believe or not.

[00:48:44] Helen Samuelson: Absolutely. And I do think sleep is, I mean, if you put that in the day, I really prioritize sleep.

[00:48:51] When I don’t get the right kind of sleep, then I notice, yeah. It really impacts my function the next day or the day after. And [00:49:00] so I really prioritize sleep.

[00:49:02] Cheryl Crow: Yeah, me too. And I noticed, so the next day it’s, I’m like kind of, I’m okay emotionally, but I have more brain fog. But then two days later, especially if I haven’t adequately caught up, then it’s like I actually, my mood will be a lot more affected and yeah. I think sleep is, we gotta be sleep divas. I printed a mug for myself. It said sleep diva and protect your sleep. When we got to fight for our right to sleep, I also become a lot funnier to myself when I’m sleep deprived. That’s a bonus.

[00:49:34] Helen Samuelson: Oh yeah. And I actually wanna I actually wanna circle back to the coping strategies.

[00:49:37] Cheryl Crow: Oh yeah.

[00:49:38] Helen Samuelson: Numerous one, because I notice that when we’re watching shows in the evening I always want to finish on something that makes me laugh. Especially if you’ve watched something that’s like a crime thing. I can’t watch too much, but I’m like this with the violence and there are some things that I’m just like, that’s gonna be a you show, and, but humor, like being able to laugh is just [00:50:00] huge.

[00:50:00] Cheryl Crow: Yeah. Yeah. And that, that is one of the great things of the internet that has come out of it is chronic illness memes. Yeah. In my mind, you know, being able to share those memes and feel seen by them is so lovely.

[00:50:13] So, this is great. I have some rapid fire questions that each one could actually be really long, but what are some quick words of wisdom for somebody who’s newly diagnosed with rheumatoid arthritis? I mean, everything you said they should listen to, but

[00:50:28] Helen Samuelson: Yeah.

[00:50:29] I think I would say be kind to yourself and take it day by day. Kindness and self-compassion, I think. And actually my top value is love. So I often ask myself, how am I gonna love myself through this? And so it’s more of a question than anything, but I think at the core, we’re all love, aren’t we? So it’s a great question to ask yourself. How well I love myself through it.

[00:50:59] Cheryl Crow: [00:51:00] Wow. I love that. I love that. I haven’t really asked myself that question, those in those exact words, you know? I think that’s a great way to envision true self-compassion.

[00:51:10] And this is a great one, but do you have a favorite different favorite quote or inspirational saying maybe for like tough days?

[00:51:18] Helen Samuelson: So, my overall favorite quote ever is the Gandhi quote, be the change you want to see in the world. And I think that kind of is out and it’s also in, right, how do I, where do I have opportunity to pivot here? What’s possible for me in this? So I think it sort of, it goes both ways.

[00:51:36] Cheryl Crow: Yeah. I love that. I never thought of it being internal as well, but I think that’s beautiful. That’s beautiful. Totally different note. Do you have a favorite arthritis gadget or tool in your toolbox?

[00:51:47] Helen Samuelson: Oh my goodness. I learned so much from you in the Rheum to thrive. I have so many. I have. Look what I’m writing with today.

[00:51:54] Cheryl Crow: Oh, yay. You built a handle on

[00:51:56] Helen Samuelson: my pens.

[00:51:57] Yes.

[00:51:58] Cheryl Crow: This is actually on the eyeliner I was [00:52:00] using for demonstration. Yeah.

[00:52:02] Helen Samuelson: Oh, I love that. Yeah, I’m definitely gonna put that on my eyeliner. I didn’t even have that. I have the things I bought the knife that is like the right 90 degree. Yeah. 90 angle knife. And even now, it’s so funny when I’m chopping things and when you are like, well, you can do this, and it’s wom, I even make the noise with it.

[00:52:21] Cheryl Crow: That’s awesome.

[00:52:22] Helen Samuelson: And I actually got a spade for the garden, a little a little digger That is right angle too. So I can I can use that. I got the gloves, the bionic glove things for the, I follow your whole list of

[00:52:36] Cheryl Crow: Oh my gosh.

[00:52:37] Helen Samuelson: How It’s ridiculous. And it’s helped me so much.

[00:52:41] Oh, the thing that you open jars that goes under the cabinet.

[00:52:45] Cheryl Crow: Yes. The Jiffy Twist under cabinet jar open. I use that, so often.

[00:52:49] Helen Samuelson: That is everything. I mean, I no longer are like, can somebody help me in here? I am like opening jar like a pro.

[00:52:56] Yes, all the things. In fact, can you put the [00:53:00] link to your

[00:53:00] Both: Yes.

[00:53:01] Helen Samuelson: Top tips below because that. I go back to that all the time.

[00:53:06] Cheryl Crow: Oh, that’s so, I’m so glad to hear that. And I did put that link in there. I just used the gardening tools this weekend actually. ’cause we’re trying to do some last minute planting before it starts getting really cold. So I’m so happy.

[00:53:18] I’m so happy.

[00:53:19] Helen Samuelson: Oh, and the gloves. The compression gloves. And yeah, look, they’re right here.

[00:53:23] Cheryl Crow: Beautiful. Do you have a favorite book or movie or show you’ve watched or read recently?

[00:53:30] Helen Samuelson: Ooh. So my favorite show is Outlander and the new season eight, the final season is about to come on.

[00:53:38] This, I think it’s, yeah, I think it’s in a couple of weeks.

[00:53:42] And so I’m really excited for that. And but I’ve been really enjoying Blood of My Blood, which is the prequel to Outlander. It’s the two main characters and Outlander’s parents and their story.

[00:53:55] And that is every bit as good as Outlander. And that’s I think that’s probably on the same [00:54:00] channel, but I absolutely love that. So I’m really loving that. And then book I’m diving into Brene Brown’s new book, Strong Ground, which just came out a couple of weeks ago. The Lessons of Daring Leadership, the Tenacity of Paradox and the Wisdom of the Human Spirit.

[00:54:17] Cheryl Crow: Wow.

[00:54:18] Helen Samuelson: Loving this this latest one and I also love my favorite author is Isabella Lande. I love all of her books. She’s such a magical storyteller, but I’m really loving Alka Josh. She has all these different, she’s the henna artist, the perfume, Mr. Paris, six Days in Bombay. She’s four books and they’re just gorgeous stories.

[00:54:42] I just, I love really good stories, and especially when you can follow families down through different books and, yes. I, yeah.

[00:54:50] Cheryl Crow: Yeah.

[00:54:50] Helen Samuelson: I love a good family saga.

[00:54:52] Cheryl Crow: Oh, I love that. This is so, this is you know, not as deep as those, but I’ve been reading some little romance [00:55:00] series where it’s like, siblings, like the different, like each one finds their love story in each one of the books.

[00:55:04] They’re so great. They’re so fun. Yeah. Yeah.

[00:55:08] Helen Samuelson: Well, you know, the other person who I pre-order every single one of her books that she writes, and I’ve read every single one is Catherine Center. Catherine. Oh, and her books are amazing that they’re funny and they’re like a romantic comedy, but they’re all, she’s, I found her through Brene Brown.

[00:55:23] They’re all, oh, they’ve got emotional agility and courage and they’ve sort of got the themes of that work through them. And so I really love her stuff too. You might love that. ’cause it’s more, oh my gosh, it’s a great read, but it’s funny and light and really adorable.

[00:55:41] Cheryl Crow: Yeah, I’m looking now, I’m like, I’m trying to think if I read.

[00:55:44] No, I haven’t. I don’t think I’ve read any of these. Sometimes I’ll, I do everything on Kindle, so then I’ll sometimes forget what the name of book was, so, oh, I can’t wait. I love, yeah, when the Emotional Connection is there. That’s my favorite. Yeah. Oh, so great. Okay. Well, and we’ve kind of [00:56:00] answered this in many ways, but last question.

[00:56:03] What does it mean to you to live a good life and thrive with rheumatoid arthritis?

[00:56:11] Helen Samuelson: Ooh. I think if I can bring a loving presence and contribute positively to the world then that’s what matters. I think. I mean, not get stuck in the hard.

[00:56:35] Is really transcend the heart and still live a life of meaning, I think is what I’m going for.

[00:56:46] Cheryl Crow: Yeah. That’s beautiful. That’s really beautiful. Well, thank you so much again. This was such a great life affirming conversation and I know some people might want to find you or connect with you online.[00:57:00]

[00:57:00] Is your social media public?

[00:57:03] Helen Samuelson: you can find me on so my website is helensamsonmullen.com. Can find our Autoimmune Campfire podcast on Substack. Yeah. It’s the autoimmune campfire that I do with Nona Jordan.

[00:57:16] Cheryl Crow: I love that name by the way.

[00:57:17] I just love it.

[00:57:18] Helen Samuelson: Yeah. It’s come to the campfire. Yeah. Come on over. We’ll have some smores and then, and then yeah you can find me on LinkedIn as well. And that’s Helen Samson Mullen. ,

[00:57:28] Cheryl Crow: Perfect. And it’s totally fine to, if you keep your social media private. I just literally forgot for a second.

[00:57:33] I was like, wait yeah, that’s awesome. And I just so American and whenever say awesome to a British first, so I’m like, I’m so American.

[00:57:41] Helen Samuelson: I say it all the time now.

[00:57:42] Cheryl Crow: Oh, you do?

[00:57:43] Helen Samuelson: Now you don’t sound British anymore.

[00:57:45] Cheryl Crow: No, you still do. You still do. Well, no it’s just wonderful to talk to you.

[00:57:49] I just love how you, you’re very much like a big picture thinker, you know, and you’re able to just explain these kind of very, I think [00:58:00] sometimes abstract concepts like, you know, values and meaning and love and all these things, like you’re able to explain how they actually show up for you in a way that’s just really makes it seem achievable to thrive with our conditions and or with whatever’s going on.

[00:58:14] You know, I know you work with lead leadership training, you know? Yeah. There’s challenges in every area of life, whether it’s work, whether it’s health, and so I just, I love this conversation, so thank you so much and hopefully we will see you again another time. Bye-bye for now.

[00:58:28] Helen Samuelson: Bye. Thank you.

[00:58:30] Cheryl Crow: Thank you.

[00:58:32]

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