Summary:
Lauren Huffman shares her journey with Ankylosing Spondylitis, and how her passion for occupational therapy and dogs has brought her meaning even through challenges. She and Cheryl give insight into the “behind the scenes” of Arthritis Life, and what resources are available. They discuss the importance of support in navigating rheumatic disease, and how the comprehensive approach of Rheum to THRIVE fills gaps in the healthcare system.
Video of Conversation
Episode at a glance:
- Diagnosis Story: Lauren recounts her journey with ankylosing spondylitis, and how the diagnosis was both a relief and overwhelming. She and Cheryl discuss tools and strategies for managing symptoms, including medication management and communication with healthcare providers.
- Occupational Therapy: Lauren, OT student and Cheryl, OT talk about what occupational therapy is, and how it’s holistic approach relates to management of rheumatic disease
- Arthritis Life: Lauren and Cheryl discuss the “behind the scenes” of Arthritis Life and Rheum to THRIVE,
- Dogs: Lauren reflects on her background in dog training, and how this passion has brought her joy despite challenges. She shares her experience with dog sports and raising service dogs in training, and how this has given her insight into adapting to make life with a furry friend possible and meaningful.
- Mental Health and Identity: Sometimes the unpredictability and dynamic nature of chronic illness can rob your enthusiasm, but it’s possible to thrive through acceptance, adaptations, and management strategies. Lauren shares words of wisdom to show up for yourself on good days and bad days, and to take care of yourself in a way that helps you to be resilient.
- Advice for Newly Diagnosed Patients: Lauren shares her perspective on Rheum to THRIVE, expressing the value of the comprehensive approach, connection to resources, and support from people who “get it”.
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:
Lauren Huffman
Lauren Huffman is a part time Program Coordinator at Arthritis Life. Lauren is certified as a health education specialist, has a background studying assistive & rehabilitative technology, and is working towards her doctorate in occupational therapy. She has been passionate about support for people with rheumatic diseases since her AS/JIA diagnosis when she was 21.
Lauren is also a certified professional dog trainer with years of experience raising service dogs, participating in dog sports, and teaching for both. She loves sharing tips and tricks for making pet ownership more accessible.
Lauren understands what it’s like to cope with the mixed feelings that come with diagnosis and treatment, change lifestyle habits, navigate the healthcare system, manage fluctuating symptoms, and how to advocate – because she’s been there herself. She hopes to use her experiences to empower others to thrive despite the challenges of chronic illness!
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:
- Speaker links
- Lauren’s Instagram https://www.instagram.com/laurenhuffman16/
- Truman’s dog instagram: https://www.instagram.com/trumanblue_andfriends/
- Cheryl’s Arthritis Life Pages:
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl: 00:00
Yay. So, I am very excited today to have Lauren Huffman, who’s probably the person who I’ve recorded so far that I know the best. So, sometimes I record episodes where I have never met the person before. But Lauren, as you will find, we go back a couple years. So, can you just let us know first where do you live? And what is your relationship to arthritis?
Lauren: 00:25
Yeah, so I’m actually from Columbus, Ohio. I’m currently living in Kalamazoo, Michigan for grad school. And I was diagnosed with ankylosing spondylitis about a little over five years ago.
Cheryl: 00:39
Yes. And let’s go into that diagnosis story slash saga. What were some of your first symptoms and how did you get diagnosed?
Lauren: 00:51
Yeah, so I had, I started having some symptoms all the way back in high school, really, but they were very mild and manageable at that point. Maybe impacted me doing sports or more active things, but I would always just chalk it up like, oh, I’m a tired teenager or the doctor maybe said, oh, just growing pains regarding joints and things like that. So, I didn’t think too much of it at that time. But then, once I was in undergrad, I kept getting worse and worse, where fatigue was really intense. Joint pain, especially in — first starting in my hips and knees really, and low back — just kept increasing and slowly impacting my ability to do things more and more. So, yeah, at that point, I was like, like, okay, something’s wrong, this isn’t normal. And then, I started to kind of seek help for it.
Cheryl: 01:55
Yeah, and how old were you at this time?
Lauren: 01:57
Yeah, so I was 20 when I first scheduled the appointments and got initial bloodwork, and then I was, like, right around my 21st birthday, really, that a lot of the, started getting rolling with the diagnosis.
Cheryl: 02:14
Okay, yeah. Similarly, similar timeline to me. And some a fun fact about you is that you are a triplet, just to throw that out there. You’re the first triplet I’ve had on the podcast that I know I’ve had. Do you have any family history of any like Ankylosing Spondylitis or like autoimmunity?
Lauren: 02:31
I do not I know some autoimmune conditions especially AS are known as, like, sometimes have a genetic component, but no one in my family that I know of has any autoimmune conditions.
Cheryl: 02:45
Right. And then, when you were — so you were going to adult rheumatology or adult doctors, right at this time? Yeah, it was similar to me.
Lauren: 02:52
Yeah, yeah, right away. Actually, it was interesting with the timeline of it, I went to the pediatrician for the last time, like, in high school for college to get like, I guess, you know, your basic college, you know, physical things like that. And then, after that, I kind of was like, okay, I don’t need to go to the doctor, it’s fine. And even when things got like bad, I was like, I can manage. Kind of putting it off until that, until it really got bad. And then, like, okay, schedule. So, I go to PCP, luckily was able to get in fairly quickly at that point, maybe a couple of months out. She ran bloodwork, including like ANA, things like that, and the ANA came back positive. And I know sometimes that can be positive even like in normal situations, but it was at a high titer and a couple of different patterns. And so, she’s like, “Okay, we’re gonna send you to a rheumatologist,” and I actually got in to the rheumatologist within just a few weeks after that.
Cheryl: 03:55
And I remember you saying that they weren’t really sure initially, whether it was maybe juvenile idiopathic arthritis, versus rheumatoid, versus ankylosing. Like, how did you get that? How was that diagnostic kind of —?
Lauren: 04:10
Yeah, so yeah, it was interesting. So, when I first saw the doctor, she actually, she first brought up lupus based on like the ANA and some other symptoms, but then she was thinking juvenile idiopathic arthritis and AS a a possibility based on symptoms. And then, after doing some more X-rays, they started coming back. She mentioned juvenile idiopathic arthritis, like the enthesitis related arthritis based on, like, evidence on X-ray. She’s like it would have taken several years for this to have shown up and given that you had symptoms, you know, going back to high school or younger, you know, that you mentioned the juvenile aspect. And then, seeing bilateral sacroiliitis with like certain X-ray findings like erosions or fluorosis. So, she’s like, this is a hallmark symptom of AS, especially along with the other symptoms you’re experiencing. And she also mentioned that for a lot of inflammatory arthritis or autoimmune arthritis conditions, medications tend to be the same under that umbrella. So, we just started going that route.
Cheryl: 05:18
Okay. Can you tell the people who don’t know, what is sacroiliitis?
Lauren: 05:23
Yeah, sacroiliitis — yeah, you’re good. It’s basically inflammation of your SI joints. That can show up on X-rays sometimes as like the bone being kind of worn down from inflammation. And then, AS likes to build it back up. And so, in really severe cases of AS, historically, people’s spines can fuse, their SI joints can fuse. Things like that, because your immune system after it breaks itself down and the joints there wants to build itself back up. So, that’s kind of that cycle of like inflammation, attempting to kind of heal, I think. At least that’s my understanding of it. And so, what that feels like is tenderness in your SI joints. For me, a lot of times with a sharp pain in my SI joints. So, I’d be like walking and then suddenly couldn’t take a step maybe. Or when I first was experiencing symptoms or first getting under control, like even at its worst, there were some days I get out of bed in the morning — because mornings were definitely the worst with it — I would like maybe take a couple of steps and fall down or things like that, yeah. Whereas like, oh, but in my mind, I’m like, “Oh, this is fine.” Like, I’m fine.
Cheryl: 06:38
That’s why I think like I always say this, like, some of the toughest people I know have these conditions, ’cause we’re like, “This is fine, I’ll be fine.”
Lauren: 06:44
Yeah. I kept brushing off the symptoms and things even when I knew, even when I had a diagnosis and was starting medications. I kept thinking, “Oh, this isn’t that bad,” or maybe it’s bad, but it’s manageable. And then, once medication started to work, I was like, shoot, like, that was, that was bad.
Cheryl: 07:01
Yeah, well, and I just want to make sure to point out when we say SI joint, that’s the sacroiliac joint.
Lauren: 07:08
Yes, it is. It’s is the joint basically in your pelvis, connecting your pelvis to your spine.
Cheryl: 07:17
Yeah, and it’s one that oftentimes even people with no other issues, that SI joint that can hurt during like pregnancy, pretty commonly, like, oh, my SI joint, you know, is hurting like in your lower kind of lower back.
Lauren: 07:31
Yeah, I have heard that because in pregnancy, not that I have any experience, but that — I mean, with the help of my health background from knowing this — but it loosens and sometimes that can cause pain during pregnancy.
Cheryl: 07:45
Yeah, your whole body becomes like all your tissues become looser, which is that laxity. But yeah, no, thank you for explaining what that feels like. It is, even though the medications are similar for like rheumatoid versus ankylosing spondylitis, in your case, it’s axial, you know, it’s on your back. It’s really affecting your back. The symptoms can feel different. Because for me, I never had back or hip pain. I have not had to deal with that other than neck pain from a car accident. For me, it’s all been like the distal like the tiny, you know, tiniest joints in the fingers and the toes. So, it’s interesting how they overlap, but also don’t.
Lauren: 08:25
Yeah, and it sometimes can cause referred pain, too. ‘Cause with the pain experience, and like my hips could be referred from SI joints or vice versa. But for me, at first, and like during some of my worst flares, it got to a point where almost all of my joints were affected to some degree, like including some of the more peripheral joints, which was odd because you think AS, you know, spine. But that was interesting, too.
Cheryl: 08:52
Yeah, under the umbrella of spondylitis — I used to always think spondylitis is always the spine. But actually you can have peripheral spondyloarthritis, or you can have axial spondyloarthritis, If you’re really lucky, like you, you can have both.
Lauren: 09:10
Right, right. I would notice sometimes, like maybe I’d be making my bed and like my wrists would hurt or pushing a wheelchair, my wrists would hurt. Or like one time I was cleaning out a candle because I liked the jar and wanting to like put a plant in it. And I accidentally broke it without realizing it. So, I was pushing glass into one of my joints. And I thought it was just joint pain just for perspective of how bad it can get when it’s not controlled. Because I was like, “Oh, I’m just gonna push through it. This is, you know, it’s just joint pain. I want this in a jar,” and like, oh, that’s not the joint pain that’s glass in my joint.
Cheryl: 09:45
I am being stabbed.
Lauren: 09:47
I am being stabbed. So, it can, it’s just interesting how bad it can get when it’s not controlled, but then how much better it can get with medications and lifestyle adjustments.
Cheryl: 09:59
A hundred percent. And then, before we go more deeply into your treatment journey and the ups and downs, and I wanted to know, what was your emotional response to being, getting that diagnosis? I know you said you were kind of a little bit like — a common denial people show is being like, “This is fine. This is fine, it’s fine. It’s fine.”
Lauren: 10:19
Oh, yeah, definitely. That was a big part of it. And I mean, the biggest thing when I first got diagnosed was one, a sense of relief, because I had an explanation for why I was feeling the way that I was. And then, also a sense of hope, because that meant medications and treatment options. And I could move forward intentionally rather than, you know, just going down the path that I had been going on. But then, there also came some grief with it as well, I think, like, oh, this is going to be a long-term management situation, not a quick fix. It’s not you go to the doctor get cured, and you move on. It’s like, you have to have appointments every few months, you have to trial medications, you have to use medications daily for the rest of your life unless there is someday a cure. So, it’s like, even when it is well managed, having that uncertainty also was really daunting. And then, also, I think, being in undergrad at the time, it made me rethink all my future plans and just how I approach things really.
Cheryl: 11:25
Yeah, and you’ve always been, to my knowledge, really involved in like helping, the helping fields like you do dogs — you help train dogs for, you know, becoming service animals. And you’ve worked in the hospital. You mentioned, “Oh, I was pushing a wheelchair,” people might be wondering why and I know you’re working in the hospital as a medical assist — was it a medical assistant?
Lauren: 11:45
Patient access coordinator, so mostly admin stuff, but we would sometimes take patients to either whatever room in the hospital they are going in, if we were more inpatient, or if I was an outpatient setting, just to their outpatient appointment.
Cheryl: 11:59
Yeah. And I remember you saying once that this is I just think — I’ll let you tell the story about how the condition felt really, I love this phrase that used, ‘soul sucking and draining’ by the treatment. And then, how can you tell the story about how your doctor once —
Lauren: 12:16
Oh, my gosh. That story cracked me up. And also it gave me an interesting perspective, too. I think when I was dealing with some of the worst symptoms, like to me, like you said, that felt very soul sucking. It made me feel like I was losing who I was. Like I’ve mentioned before, like it’s, I think, when you’re diagnosed with a chronic illness, or even just start having those symptoms, it’s like kind of dehumanizing because you lose your ability to do the things you need and want to do. And that’s such an important part to your identity. And so, that on top of the fatigue and like the pain and other symptoms, that just was so constantly draining. So, when I received my original rheumatologist, I think I appeared, maybe rather flat, at least she mentioned later on, she’s like, “Oh, I thought you just had a flat affect.” But like, I think between that, and then also, I know a lot of like, doctors because, you know, this doctor was new to me at the time, I know, a lot of people will say, like, “Oh, you are acting fine, you are acting enthusiastic. So, you must not feel that bad,” or, “You’re acting really upset. It must just be anxiety.” And I think that also was in the back of my mind. So, I also was like, not really showing my personality between not feeling it to begin with, and also wanting to just be neutral. So, once medications really kicked in several months after starting this process, she’s like, “Oh, I thought you just had a flat affect but you’re really enthusiastic and you’re really happy,” and it was just, it was really telling I think of what it can do to your mental health as well.
Cheryl: 14:00
Yeah, and I mean, I will say that’s a bit bold of that rheumatologist to literally say you had a flat affect to your face. Because to me, that’s kind of like insulting.
Lauren: 14:09
I know. I don’t think she meant it like that. I really liked this from otologist. But I think it just was like her, she was just saying her like gut reaction to me. She didn’t realize how much it affected that. Yeah, I don’t know. So, that was interesting.
Cheryl: 14:24
Well, and that’s something that I appreciate about you though, is that you are, I would say like, I find I sometimes am like kind of swirling around with all these ideas and you’re, you have a, I would say, a calm demeanor. You know, sometimes if we’re having a meeting about Arthritis Life stuff, and I’m like, spiralling and you’re like, “It’s gonna be okay,” you know, so maybe she is taking that is a true part of your personality. But —
Lauren: 14:50
Yeah, that’s a good point.
Cheryl: 14:51
Yeah, I think. Yes.
Lauren: 14:53
Yeah. But I think I would like go into the appointments very matter of fact, and just kind of roll with it and go with the flow, because I didn’t let any outside factors to impact it. But also like, when you are that, when you’re feeling that poor, I think it’s just hard to really show who you are. Because I think one factor, too, that a lot of people don’t always realize about autoimmune conditions, at least in my experience, is the sense of malaise, which is kind of separate from fatigue but has some overlap, I think, where I like to compare it like, okay, if you have the flu or a cold or some other like viral illness, you’re going to feel that malaise. You’re going to feel under under the weather, just that general, like, weakness or discomfort. And I find that to be true with autoimmune conditions, too. It’s like, your immune system is fighting both now and the latter might be fighting your body itself, but it still is fighting, which is causing that that malaise, too.
Cheryl: 15:53
Yeah, a hundred percent. I think there’s times when my body has felt — I’ll explain like my body’s fatigued but my brain’s not. Like, my brain feels enthusiastic and energetic, but my body is just fatigued, that I can’t get off the couch. But I can sit and like have a conversation with you and like, you know, engage. But when my mind is fatigued, and my body, and everything’s just like that sense of malaise. It’s more like everything’s down, you know? And I think the analogy is perfect, too, having the flu or something like that. And yeah, I felt I remember, you know, in 20, my kind of rock bottom healthwise not just related RA — actually, my RA was kind of fine. It wasn’t great, but it wasn’t horrible at this time. But I had other issues, like 2016, 2017. And I remember thinking, I started this blog in 2010, called theenthusiasticlife.com. And I was like, nothing about me feels enthusiastic right now. Like I’ve, I feel robbed of my enthusiasm. Like, that’s such a core part of my personality that even though when I started that blog, I’d had rheumatoid arthritis for six years, I still was like, well, this is something that’s going to be permanent, like, I’m an enthusiastic person. But even when you get to those periods where you’re just, your body is just wiped out. You’re like, I have nothing left. It’s just, like you said, it’s hard.
Lauren: 17:12
Right. Like it puts you in survival mode, really. And then, it makes you, at least for me, also, I think, being in college and undergrad, in some ways it made me feel like a burden, because I was not able to do certain things for myself. Or it’s not like you’re, you know, always working full time if you’re, you know, a student. And I think it just is really overwhelming in that sense, trying to think about like that, and then like longer term, too, and how that like impacts your identity.
Cheryl: 17:44
Yeah, that’s why I want to definitely circle back to that, because we’re going to talk about how you chose the amazing career of occupational therapy. But first, just to tie the loop of your treatment journey, because a lot of people want to know, what’s it like to be on these different medications so they can learn from other stories. So, what has been your treatment journey over the last five years?
Lauren: 18:07
Yeah, so when I was first diagnosed, the main medication that I started was Humira. That is a biologic TNF inhibitor. It’s an injection that you give yourself. For me, I ended up giving it to myself once a week. And, at first, like, I think the hard thing with biologics especially is it does take some time for it to build up in your system and to start actually making a difference.
So, it’s not like you give yourself a shot and you suddenly feel okay. It’s you do that over and over and over again, hoping that you eventually get some relief from it. And if not, you start over with a new biologic. And with Humira, it helps with one of my really weird symptoms. Like one of my early symptoms, like if I would sit too long, either in the car or at a desk, once in a bus on the way to a trip with undergrad, I don’t know if it was like inflammation pressing against nerves or something, but it felt like raindrops like going on your back. S
o, it’s like, oh, is it raining? No. Isn’t that bizarre? I haven’t really had that since starting biologics. So, it was just like a variation of like, numbness and tingling, but it was like along the spine. And that would happen relatively frequently. And then, Humira wants to start taking it. That symptom went away. And other similar weird, like, I would classify weird symptoms would just like go away on Humira. But the more impactful symptoms like the joint pain and the fatigue, it was getting a little better, but not a whole lot better. And so, at that point, my doctor was like, “Okay, we need to try a different biologic.” I was a bit stubborn, initially, to switch because I was like, but wait, it is doing something. What if we switch and then I get one that does absolutely nothing. I go back to square one.
Cheryl: 20:01
Yep. I’ve had that same fear. You’re not alone.
Lauren: 20:04
Yeah. And I think for me, too, it’s like, when I was initially diagnosed, I didn’t even know what the flare was, I think because I was in a constant flare, just maybe constantly increasing flare rather than the ups and downs at that point. And so, I’m like, wait, I’m finally doing on the down of the symptoms, finally getting some improvement. I don’t want to switch. But my doctor reassured me that it would be a smart decision to switch. So, she put me on Enbrel. And also, I’ve been on some other medications, too. And then, I’m still on like leflunomide and Meloxicam and prednisone as needed, joint injections as needed, things like that. But I consider the biologics to be the MVP med, because those have historically made the biggest difference by far for me.
So, on Enbrel, that one took a few months for me to notice like any positive impact. I actually had the most side effects with Enbrel and starting. So, the first few months, I’d have that like biologic hangover, where my fatigue would actually increase. I would feel kind of like, just, I don’t know, not very good, kind of like queasy and just like, not great. But then eventually, like, after those few months, I stopped getting any side effects from Enbrel and woke up to the morning like feeling, like, basically normal. And I’ve had ups and downs even on Enbrel, but I remember waking up and staring at my ceiling like, oh, my gosh, like, I feel so much better. And it was just mind blowing to me what a difference that had made.
Cheryl: 21:49
Yeah, you kind of, like you said earlier, too, is like you don’t know how bad you were feeling until you start feeling better. You almost forget what normal is when you’ve been living with so much pain.
Lauren: 21:59
Right. And like, mentally I think that was actually harder for me, because I was kind of in that, again, that survival mode before of like, you know, just keep swimming, do what you need to do. It’s fine. It’s fine. And then, it started more mentally hitting, I think, once I realized the difference between like it being uncontrolled or controlled. And then, since then I was on Enbrel for like, I think for probably a little over four years, I think.
(mid episode advertisement for Rheum to THRIVE program)
And then, I had to uveitis flare back at the beginning of 2023.
Cheryl: 22:34
Oh, can you tell them what uveitis is?
Lauren: 22:36
Oh, yeah. So, that’s basically like inflammation in your eyes. And I’ve had it a couple times before where it went away quickly with steroid eyedrops, or like prednisone, and it was fine. Like it can impact your vision and make it blurry. It makes your eyes really sensitive to light; they might look red and swollen. But it’s never been a really huge deal for me before then. But it just wasn’t going away at this time. And it was like, worse than usual. Like I had to stop wearing my contacts. It was just impacting my vision more than in the past. So, at that point, I ended up being switched to Cimzia which supposedly helps more with uveitis and was on prednisone for months at a time at a higher dose, which is a double-edged sword for sure.
Cheryl: 23:26
Yeah, what were what was your body’s response to prednisone?
Lauren: 23:30
Yeah, so sometimes I’ll use prednisone as like a rescue method, at a more moderate dose for a short burst or short period of time. And when I do that, I don’t really experience side effects that I notice except feeling kind of wired. But when I was on it for months at a time, I had that feeling, you know, especially feeling really wired. It really messed with my sleep, and inability to get quality sleep, I felt like. Like even if I slept, I just didn’t ever feel well rested on prednisone.
Cheryl: 24:03
Similar for me. It’s really, it’s really the major downside.
Lauren: 24:07
But it’s hard because it helps with other things so much. And then, I’d never experienced like any sort of like, weigh gain on prednisone before but doing it at that high of a dose for that stretch of time, I did notice that, too. So, that wasn’t fun. But.
Cheryl: 24:22
Yeah, that’s, yeah, a lot. It’s a really common one, like people don’t like the kind of the, quote unquote, ‘moonface’.
Lauren: 24:29
Right. Yeah. And I noticed that for the first time, and since being off of it and since tapering off it, it’s fine. But I definitely can compare pictures from those few months and be like, oh, there’s a difference, so.
Cheryl: 24:40
Well, I know that, you know, on the one hand, we have to we deal with the treatment ups and downs of, you know, is Enbrel working, is it not? Is Cimzia going to work? There’s also access to medication.
Lauren: 24:53
Oh, yeah, for sure.
Cheryl: 24:55
Because I remember, because we’ve been in touch, we meet every week, at least once if not twice about Arthritis Life as people will find out more as we talk more about it, but you have had to — this same thing happened to me when I went to graduate school, when you move states, when you move any where, you know, you have to deal with getting your meds in a new place. And I don’t want you to have to go through the whole thing. But do you want to just share a little bit?
Lauren: 25:19
Totally, yeah. ’23 was a big year of changes for me across the board in my life, but especially changes within like my rheumatology care, not just switching my biologic medication but I had to switch rheumatologists multiple times in 2023. So, I don’t really feel super well established with anyone at this point, I just kind of see who I can when I can get in, which I don’t love. And then, having a harder time getting appointments, having a harder time communicating with providers. I switched my insurance over the summer. And that was a huge headache with getting medications. Because the insurance that I switched to just kept like denying things, I think trying to push things off and push things off because biologics are really expensive. And it’s like people really can’t afford to pay full price for biologics. And so, insurance. And then, like copay assistance from the biologic manufacturer can help. But with the insurance, it’s like, you really have to advocate for yourself or have a pharmacy team who can advocate for you to get that worked out. And then, since moving, my meds are now being shipped all the way from Memphis, Tennessee. So, and I’m in Michigan. So, it’s just interesting how that works out.
Cheryl: 26:40
Yeah, it’s really like a lot of people say, it’s a full-time job, just managing the admin of your health care again.
Lauren: 26:47
It really is. Making the calls, going into the appointments, following up, knowing what to do if appointments get cancelled, or, you know, anything like that. It’s just, it is a lot of work on that side.
Cheryl: 26:59
And you’re going to school for occupational therapy.
Lauren: 27:02
And I’m going to school.
Cheryl: 27:03
Yeah, yeah. No, actually, let’s go on to that. Why did you choose occupational therapy as a career?
Lauren: 27:09
Yeah, so I actually first started looking into occupational therapy back towards the end of high school. I was dog sitting where family because I did a lot of dog walking and dog sitting then, you know, still now at times. But the family was like, “You seem like you’d be a really good fit for OT, do you know what it is?” And I didn’t really know much about it. But we had a senior project where I was able to set up, going to actually, like, help out with OT and learn more about it. And that was really eye opening about the lifestyle interventions and the impact of OT. So, that’s initially what drew me to OT. Then I went to college and was like, okay, I’m going to keep an open mind. I looked into various health professions, because I did like the idea of health professions. And then, also looked into various dogs things and I’ve kept up with some some of my dog passions, too. But it was my diagnosis and experience with that, that really brought me back to the field of OT. I think it was eye opening to see the difference that it made when you have a hard time doing what you need and want to do effectively. Just how important that is to people for their purpose and things like that. But then, also for me, I knew my daily occupations are what kept me going even at the hardest times. Like even for me, one of my biggest, like, fun occupations will be the dog stuff. And so, being able to participate in that helped me have purpose and, you know, want to keep, you know, working to get better. And school, having that as a motivation, having that as an occupation, you know, also motivated me to keep pushing through a lot of the symptoms and self-care journey, so.
Cheryl: 29:08
Yeah, and I, and in occupational therapy, we often refer to our meaningful activities as occupations, such as, you know, your like ‘occupation’, because a lot of times people think that means like job. But in our case, I often just think of it in a shorthand as like meaningful activities or required activities throughout the day. So, all the little jobs that make up your day.
Lauren: 29:32
Exactly, yeah. It can be really anything that you need or want to do. So, it can be as small as, you know, making yourself breakfast, or taking a shower independently, like those are important parts to your day. And being able to do those independently do make a difference, and your ability to care for yourself and your self-image, things like that. And then, of course doing those more instrumental activities of daily living like school or work or hobbies, social life. Again, same thing goes, you know, brings meaning and purpose to your life, too.
Cheryl: 30:06
Yeah, yeah. And I’m curious, were you ever referred to occupational therapy as a patient?
Lauren: 30:13
So, I eventually was, but then I didn’t end up going. Again, long story short, access issues and things. However, I was much more earlier on referred to physical therapy. I think a lot of people in the healthcare professionals don’t always understand the full scope of practice for OT, especially in the case of chronic illness. And so, it’s overlooked. And so, I think that wasn’t considered. It was more of an afterthought, eventually. But I was initially referred to physical therapy, and sometimes my PT’s would actually seem to work on some things from an OT type lens at times, too, so.
Cheryl: 30:49
Yeah, I mean, we do overlap. And but yeah, I’m just always curious to ask people that because we, I know you know that’s one of the reasons I do the work I do and created Arthritis Life is to fill these gaps and —
Lauren: 31:03
Right, and why I’m so passionate about Arthritis Life, too.
Cheryl: 31:05
Yeah. Yeah. And so, before we move on to Arthritis Life, how do you define occupational therapy, to people who don’t know what it is?
Lauren: 31:14
That’s a great question.
Cheryl: 31:15
The dreaded elevator speech. I didn’t tell you that before. I am not trying to quiz you. I just thought of the question now.
Lauren: 31:22
I mean, really, for me, I explain it as like as helping people like either rehabilitate or find accommodations, or maybe adaptive equipment, things like that, to get back to doing those meaningful activities of life. So, you might be working on, let’s say, you’re having a hard time raising your blow dryer up to dry your hair after showering. So, you might work, you know, with a patient on how to either help them do that activity, or maybe find, let’s say, a hanger to put your blow dryer on a hanger and then dry it that way. So, it’s finding ways to still do the things you need and want to do in life.
Cheryl: 32:01
In short, it’s so pract — no, and that’s what’s so great about it is it’s so practical. Yeah. So often because it’s like a double-edged sword that it’s so practical, because it’s about those real down to earth everyday activities, people sometimes think, well, wait, how does — there’s no, like, masters in this field or doctorate, like, how would you get a doctorate in like doing stuff of daily life, you know?
Lauren: 32:26
But it’s really thinking about things from a creative approach or from a thorough understanding of health diagnoses and getting people back to doing those meaningful things. And so, I think just like how we have to often advocate for ourselves with chronic illness, the OT profession, providers really need to advocate for themselves, too, to make their voice heard, so that our scope of practice is understood, so that we can make the difference for patients. Because like you were saying, there are gaps in care. And OT really can make a big difference in the world of chronic illness, especially with autoimmune arthritis. There’s so many lifestyle interventions and strategies that can be used to make life better. I know, for me, it’s like, I go to the doctor, do tests, you know, X-rays, bloodwork, get diagnosed. And it’s kind of like, “Okay, good luck, take these medications and see you later,” but that doesn’t account for the several months in between medications before you find something that works where you’re like, “Okay, I can’t do this,” or, “I can do it and it hurts. What do I do?” You’re kind of stuck. And so, OT can really step in and help with those things. But I think there’s just, you know, again, gaps where people don’t realize that.
Cheryl: 33:44
Yeah. Yeah. And there’s also the barriers, because it’s a lot of the healthcare system is not set up for preventative care.
Lauren: 33:52
Yeah, or management care. It’s like if you’re not getting better, if it’s a progressive condition…
Cheryl: 33:56
Yeah. Like the only place it’s being done, really, that I know of is diabetes, where you get to see like a certified diabetes educator. And like, in a way, I’m like, I’m an arthritis educator.
Lauren: 34:06
You are, absolutely.
Cheryl: 34:07
Like I just decided to create my job, and I do it now.
Lauren: 34:08
Yeah, and it’s a necessary job.
Cheryl: 34:09
Yeah. Yeah, no, I’m so glad. I can’t, I can’t even remember how you — I encountered you first as a volunteer.
Lauren: 34:19
Yeah, well, even before that. So, I guess if we’re going back in my story to that point, like I graduated undergrad in the pandemic. And I was like, okay, I’m immunocompromised. I don’t know much about COVID, because it was early on. I mean, it was literally, I graduated maybe two or three months after COVID started.
Cheryl: 34:39
Oh, I forgot about that.
Lauren: 34:40
Two months, not even two months because COVID started, I remember, I had my last day of in person classes, March 7th of 2020. And I graduated, I think, very beginning of May. It may have been May 1st if I’m remembering correctly, or somewhere around then. And so, at that time, okay, I was like, okay, don’t know what to do as far as like, you know, my future plans are. Like, I’m still thinking OT, but I’m like, do I really want to do all online classes or mostly online classes for a doctorate program where you’re working hands on with patients? Or do I want to, you know, do something else in the meantime? And then, I also considered, okay, don’t — I know a lot about OT but I don’t know everything, what if my condition gets worse, and I can’t be the provider I want to be? Is it smart to, you know, take these years and spend the money to go to school and then not be able to do it? Now, of course, I know there’s so, there’s such diversity that in the OT profession you can really, you can do all kinds of things. But that was a consideration. And then, some other things that made me feel like it just wasn’t the right time. And I needed to make sure I was in a stable situation and not go straight to grad school at that time. So, I ended up getting — so I continued working with some dog training stuff. I taught some dog training classes during COVID, especially online, teaching people how to train their dogs. A lot of people got COVID puppies as something to do during the pandemic, so I was able to teach a lot of people virtually.
And then, I got a job at the hospital, which I know that sounds counterintuitive. It’s like, oh, it’s COVID, why are you going to work at the hospital? And I ended up doing an admin, more so admin sided with that, because there was still barriers between you and patients most of the time. And I felt like, okay, even though COVID, you see a lot of patients in the hospital, hospitals are strict with wearing masks. So, you and your patient had to both have masks on. There had to be usually some sort of divider, and also the patients I saw for what I was doing, it was very brief periods of time, so not long enough to really get exposed to COVID, typically. So, it felt pretty safe. And then, I was also able to get my vaccine right away when it came out. So, from that point, I was like, okay, I’m getting healthcare experience in this way and not feeling that I might be like missing out on education by doing that remote only. And then, around that time, I also started, I did start a remote program with assistive and rehab technology, because I’m like this relates to OT, and that one was only offered online anyways. And tuition was paid for by my job. So, I’m like, why not? So, that’s pretty much what I did for a while during the pandemic, was classes for that and working in the hospital. So, still progressing towards OT, without diving in right away. So, I guess going back to like, the initial how we got connected, I was like, okay, I need to learn more about OT. I actually came across your account and have been following for a while. You would put things in your stories where I’d like reply, I think.
Cheryl: 34:51
Oh, yeah!
Lauren: 34:54
Comments, questions, any feedback. I was like, very active with that. And then, one day, I think I just said, “Hey, can I meet with you kind of talk with you and get your perspective on being an OT with autoimmune arthritis?” Because that’s not a common thing. And so, I think we met and just it went from there. I started volunteering and the rest is history.
Cheryl: 38:16
Oh, my gosh, yeah. Thank you for reminding me. Thank you, brain fog.
Lauren: 38:20
That was a very scattered story to explain all that, but.
Cheryl: 38:24
No, no. It all relates though. And I often do tell people who are considering OT, it’s good to have some work experience before starting. I think it’s especially in like either an educational setting like a school-based setting or a hospital or healthcare setting, just because the people I found in my program who went straight from undergrad to grad school without having any external work experience, sometimes it’s just you don’t have a realistic sense of like what might actually be possible, you know.
Lauren: 38:56
Totally, and it was hard at first, too, because in the pandemic, I couldn’t get additional observation hours. My very first sort of observation hours were back in high school. But it was only in a pediatric hospital setting, which was cool, but I knew there’s so much more to OT than that. And I really wanted to see that. Especially because I wanted to see, okay, is this really feasible for me to pursue. And I couldn’t get those observation hours. I didn’t really want to jump right into OT if I couldn’t do some more observing. So, during that time, I was able to observe all kinds of settings eventually, you know, once a lot of the precautions were lifted. And then, of course, we talked and that really made me feel better about still pursuing OT despite my diagnosis, so.
Cheryl: 39:46
Yeah, and for those listening who might be interested in a career in occupational therapy versus like physical therapy, one of the things that really differentiates us is that occupational therapists can work in a completely mental health setting where you’re not doing any physical disabilities at all, and you’re not having to do anything hands on versus I think, my understanding, I’m not aware of any PT’s that do fully mental health. They’re always doing something to do with the physical disabilities is my understanding. And so, that’s something that was, that attracted me to occupational therapy versus physical therapy. But back to —
Lauren: 40:23
Oh, on that note, too, before we continue, I liked that component, too, because that mental part is often so overlooked across the board, but especially in like rheumatology of how it impacts you to have so many things stripped away from you. And so, being able to, one, work on mental health with patients, it is easier on your body. But also, it’s a more holistic approach. I mean, the other healthcare settings are holistic, too in a lot of ways, but I think OT especially considers the whole person in that sense. So, that’s pretty cool, I think.
Cheryl: 40:59
Yeah, absolutely. And I just for those also listening, everything we’re saying is for you listening, but also, I do, as my capacity allows, I do take volunteers, especially people who want to go to occupational therapy school. I have a couple — I have written recommendation letters for, including you, and Elsie. Hi, Elsie, if you’re listening. And Jessica. And so, if you are interested, just email me at info@myarthritislife.net. I don’t make like a huge thing about it. It’s just been more like organic, like people have contacted me. But it’s a good way to get like observation, like a non-traditional setting. But yeah, so yeah, when I met you, I was like, oh, so, you know, this is great, because she seems like a nice person with a good head on her shoulders. And like, she has experience, you know, with patient experience, you know, with ankylosing spondylitis.
Lauren: 41:48
Yeah, it’s the best of both worlds, really.
Cheryl: 41:50
Yeah. Yeah. And, like, I would love to hear more from your perspective. You know, what is the value of some of the programs and the stuff that we do at Arthritis Life?
Lauren: 42:02
Yeah, Arthritis Life is incredible. And, you know, for those listening, Cheryl is incredible.
Cheryl: 42:11
Oh, thank you.
Lauren: 42:12
Just, I think, for me, what makes Arthritis Life so special is the amount of care and thought you’ve put into the programs. It’s so comprehensive. I mean, like, you, Cheryl, you’ve thought of everything that a patient could need in their toolkit. Like that, I mean, it feels like that to me, because you get diagnosed and are often left on your own for so many things. But you consider how it impacts every little part of your life. And then, make sure that people get the support that they need or the resources they need to, like, keep moving forward or to have hope, or at least a realistic sense of hope. So, you’re enthusiastic with your programs, but also like not having toxic positivity. And you’re not saying, “Okay, you’re going to be cured,” you’re giving very tangible ways to improve your life, or like a new perspective for people, especially like the Acceptance and Commitment Therapy perspective. All of that, I think, is really useful. But the self-paced program has a lot of educational content, and then you get that, of course, with Rheum to THRIVE, plus the support groups, which I think provides that safe space where you can connect with others who get it. And I think, you know, it can be great to talk with friends and family about what you’re going through, but they might not always totally understand. And so, to be able to talk with somebody who gets that or a group of people who get that facilitated by somebody who gets it and understands the healthcare side of things and the OT lens, I think that makes it really unique. And then, as far as podcasts go, I think there’s so much value in sharing people’s stories, you know, just to make people feel like they’re not alone, maybe again new perspectives on things, and really connect people.
Cheryl: 44:06
Yeah, well, and thank you. And it is definitely the genesis of like the Rheum to THRIVE program that I developed really is from the gap that I saw, you know, that patients were, like you mentioned, they’re just given one 20-minute appointment and then left on their own. It’s just not, that’s not a recipe for success, for a chronic, complex condition.
Lauren: 44:30
Like we’ve talked, like, this is the resource that it’s like, you know, we wish we had this when we were diagnosed kind of a thing. And so, being able to share that with people. So, you know, again, having a sense of direction and not going down rabbit holes and misinformation, I think it’s so useful. And so practical.
Cheryl: 44:51
Thank you. Yeah, that, yeah, I do, you know, I’m trying to do a better job of explaining to people what is available, you know. So, like you mentioned, there is the Rheum to THRIVE self-paced program where you can go through the lessons. It’s a whole set of comprehensive, you know, lessons on how to manage pain and fatigue, how to manage habits, because that’s one of the most confusing areas, like nutrition, exercise, sleep, rest, of how do you manage all those things? And how do they actually help your condition potentially. And then —
Lauren: 45:25
Or strategies to use if you’re struggling in those areas.
Cheryl: 45:29
Yeah. Yeah, and then the mental side and the social side of things, and then how to connect back to our values and valued activities, and then how to manage those, you know, executive functioning parts of the chronic illness experience, like we talked about earlier. Advocating for yourself, you know, making the most of your appointments, planning, preparing, so it really is meant to be like the orientation manual. And it doesn’t just mean orientation for newly diagnosed because most people have never gotten access to this kind of program before. So, like, actually, my testimonials from people who’ve had the disease for like 5 to 10 years or longer are actually often stronger testimonials than the people who are newly diagnosed, which at first surprised me. But then I realized, oh, it might be because the people who’ve had it longer have had to struggle longer.
Lauren: 46:20
Exactly. Oh, totally. They realize, they realize the gaps more fully and where they’ve had to problem solve or not be able to problem solve. I hear so many people say like, “Oh, you’re gonna overcome like X, Y and Z diagnosis and, you know, do whatever you want to do.” And that’s not always the case. And so, being able to actually put people with resources at any point in their diagnosis with a chronic illness, that, I mean, that can make a big difference.
Cheryl: 46:48
Yeah, well, I’d say, I mean, at this point, I just want to say thank you to you, too, for helping. Because not only did you help for, you know, for a couple years as a volunteer to help just kind of, you know, everything from helping make quote posts from the podcast or social media content to now I, you know, you have a part-time contract in helping with the, do the back end of the programs, which is a lot. A lot of work goes into the Rheum to THRIVE, and especially the support group, you know, everything. Yeah.
Lauren: 47:19
I think people will be amazed if they realized just how much work goes into all like Arthritis Life content and resources, but being able to be behind the scenes gives me that really interesting perspective. And then, it’s so meaningful. Because again, the OT lens plus rheumatology. So, yeah, I just, I’m also so honored to be a part of it, really. It’s such a highlight for me.
Cheryl: 47:44
Oh, thank you. No, I’m so grateful and that you’ve definitely given me I would say a lot of, in my head, I labelled them as like ‘sanity checks’, which what I mean is like, if I’m anxious about something, you know, you’ve been able to either reassure me or say, “Yeah, I agree. That’s a problem, you know, you should do something about,” or that’s, I think, you, like I mentioned earlier, calm demeanor is something that I appreciate, because I definitely think we’re both enthusiastic about our work. But we have different kinds of like, like, my enthusiasm sometimes spirals into anxiety, which maybe, maybe if yours does, you do a better job at managing that, too.
Lauren: 48:27
Well, I think it makes sense. One, because Arthritis Life is your baby and two, I mean, people can — you want to be careful how you approach something’s because people can take it the wrong way, when you don’t mean it that way. Or you want to make sure you’re servicing people appropriately. So, I think, you know, having a certain level of anxiety when you are helping people in that way, it makes sense.
Cheryl: 48:50
Yeah. See, you just reassured me right now. Perfect. Yeah, well, I mean, I think, you know, there’s so much more we could say about your story and about Arthritis Life, but I also, I don’t want to go to the rapid-fire questions before asking you a fun question which is, I’m sure it crossed some people’s minds when you mentioned earlier, service dog training and training. Just how did you get involved in like the dog training world in general?
Lauren: 49:21
Yeah, so my story with dogs is — what were you going to say?
Cheryl: 49:25
I was just going to say I’m asking two questions, but how did you get involved, and then what are some tips like, quick tips for people who might be struggling with managing the leash or like the physical demands of having a dog?
Lauren: 49:38
Yeah, so going my story with dogs goes way back. You know, first starting with when I was a kid, I had a dog walking business. I actually first, yeah, so when I was 10 years old, I started walking dogs for a couple of families in my neighborhood and other neighbors in that vicinity kept seeing me walk other people’s dogs all the time. Plus, we had one dog that I got when I was nine. So, they would see me out with all these dogs. And then, eventually they figured out that I would walk dogs after school. And so, more and more people kept asking me to walk their dogs after school. So, usually for like, one or two hours after school, you know, I’d get home and walk the dogs. And I think that was really, I just, I fell in love with dogs so much. I mean, I loved dogs even before them but that really made me fall in love with the dogs. And then, saved up money from that and got my own. You know, aside from the family, dog, you know, got my own dog in the family that I could train or do whatever I wanted with. And from there after doing a lot of, you know, trick training and other fun stuff for a few years, one of my best friends in school convinced me to join 4-H. I don’t know if people really know what 4-H is unless, you know, you’ve been in it necessarily, but it’s kind of like Girl Scouts if you’ve ever, if you know Girl Scout or other like club type activities, except with this area for which it was all dogs. So, anything that I was doing for it really was focused on dogs. So, I started with therapy dogs. My dog took like the Canine Good Citizen test. And we started visiting nursing homes, libraries, with pet pals with 4-H and showing in obedience, and forage, agility, showmanship, all kinds of things. And that really continued to connect me to people and foster my love of dogs. From there, in college, I began fostering service dogs in training with a program. So, I raised a few, and that really showed me about what it looks like to take a dog in public and what accessibility is like for that and how it can help people with various diagnoses. I mean, most of the training I would do at that point was very basic. Basic manners, public access training, really getting the dog started off on the right paw, so to speak.
Cheryl: 52:01
But let me just say that that basic training is a lot.
Lauren: 52:05
Oh, it is.
Cheryl: 52:06
I only have had — I’ve always wanted a dog. I finally got my little Cavalier King Charles, which is like known for being like the easiest, like, right, they’re kind of like the easiest dogs, like, they’re so sweet and eager. So, he is. And even that was a lot of work, though. And to do the basic obedience class, I’ve never —
Lauren: 52:25
Sometimes the basics can actually be harder than the more advanced stuff, because by the time you get to the more advanced stuff, typically, if it’s your own dog, you’ve built a bond to them. Or even if it’s not, and you’re training a program dog, at least they still have that foundation. And so, they have learned how to learn. A lot of these dogs, you know, they love to work, they love to have a job, you know, and if they don’t, and it doesn’t work out, then they can be adopted out as a pet or a career change or to do a different line of work, maybe if they’re higher drive dogs, so.
Cheryl: 52:58
And then, just to let people know very quickly, there is a big difference, a huge difference, between a service animal and a therapy dog.
Lauren: 53:07
Absolutely. There is.
Cheryl: 53:08
Can you tell them that?
Lauren: 53:10
Yeah, and then like emotional support dogs, too. So, they’re each a distinct area, and there can be some overlap between each but, really, with service dogs, they must be — to be a service dog, they must know at least one task that mitigates a disability. So, you can, you know, have a dog that does a bunch of tasks. Maybe they can open a door, or take off socks or, you know, other things that might be helpful. If you don’t have a disability, it’s still not a service dog. Or you might have a disability but your dog, you know, doesn’t know any specific tasks that makes your life easier having that disability, then it still isn’t considered a service dog. So, when you go out in public with, you know, a service dog employers can ask, is this a service dog required because of a disability? It’s a ‘Yes’ or ‘No’ question. And then, what tasks does it perform? And they can’t ask you anything else, you know, as far as invasion of privacy goes. They can’t ask you for your diagnosis. They can’t ask you for a doctor’s note. But it does have to perform a task for disability.
Therapy dogs, they are, you know, they have to pass certain tests depending on what organization you certify through. Service dogs, you don’t actually have to have a certification truly. There’s, I think, the service dog world can it has room for growth in some of those areas, but there’s lots of barriers and, you know, that would be a whole ‘nother podcast, but therapy dogs do have to be certified through organizations. And so, I think that’s partially because, you know, they’re interacting with the public, with many people. And so, they need to be very safe from a liability standpoint. Therapy dog programs typically have liability insurance and so, with a therapy dog you might be asked to visit a setting like a hospital, hospice, library, nursing home, support groups, things like that, to help bring comfort to people who could use some comfort. Maybe after a traumatic event, you know, you might go to a school or somewhere else to to bring that comfort for people. And so, the dogs, you know, they need to know basic obedience and manners. They shouldn’t be like tackling people and no growling at people, anything that could be hazardous. But they don’t technically need to know tasks. Although I have found that having tricks or tasks can make therapy dogs better.
Cheryl: 55:47
The thing that I’m needing to work with Teddy on because I did want to when I got him, my goal was to train him to be a therapy dog. And then, COVID happened, which I should have used that time better.
Lauren: 55:59
Anyway, it was hard to because socializing was tough during COVID, so.
Cheryl: 56:03
Yeah, and the thing for him, it’s not just about like, are they aggressive? It’s also like he’s actually such an enthusiastic social dog that he has a really hard time with like a calm greeting,
Lauren: 56:14
Truman’s working on that too.
Cheryl: 56:17
Who’s Truman?
Lauren: 56:19
Truman is my golden retriever. He actually just heard me say his name. He is walking over to me now. If you’re listening to the podcast, you can’t see. But if you’re watching on Youtube —
Cheryl: 56:28
Go on YouTube to watch this.
Lauren: 56:30
He’s so funny. He just literally woke up and crawled over to me.
Cheryl: 56:33
Oh, little —
Lauren: 56:35
And he got entangled in my headphones.
Cheryl: 56:37
Let’s see if I, if Teddy — well, oh, I just saw him. He’s sleeping. He is, my little pup Teddy is looking at me now. I’m going to bring him over, too. Hi. You want to go on the podcast? Yeah, you’re just a little teddy bear.
Lauren: 56:56
Because he just woke up from hearing me talk about him. He is so sweet. He is a year and a half old. Almost, not quite actually. But, yeah, he’s 16 months right now. So, he’s sometimes still acts like a puppy. But he is pretty much full grown. And he’s my dog. So, after raising Golden’s and golden crosses. from various programs, and, you know, I loved other breeds, too, from dog sitting and other experiences. But Golden’s really won my heart over through the service dog training. And I’m like, I need one that I don’t have to give back. And so, after some networking, some waiting, and Truman came into my life, and he’s just the best. He brings me so much joy.
Cheryl: 57:48
He’s so sweet. Oh, my gosh. Well, we should definitely do a separate episode just about dog stuff. I never thought about that before. But there’s one thing people ask me about a lot is like hands-free leashes. Like, I use one with Teddy but he’s only 20 pounds. Like, are there any just quick tips for, yeah, arthritis for —
Lauren: 58:10
Yeah, so like you were saying, hands-free leashes can be really helpful. Like, if you’re having pain in your hands or wrists, especially, you know, I have found that like, it can be easy to drop a leash, you know, if that’s happening. Because if you have pain there, sharp pain, especially, it might just slip out of your hand on accident or things like that. So, having a hands-free leash can really alleviate the pain and the stress of that. So, there’s a few that I liked that you can actually have like a belt around your waist. So, I like that one a lot. I have a couple of different hands-free leashes. So, ones like that I think can be helpful. I have heard some people say like, “Oh, if my dog pulls, and I have them, you know, attached to a belt on my waist, they’re just going to pull me over.” And so, that is partially knowing your dog and your situation, what might be appropriate and what’s not. You know, of course, working towards teaching a loose leash walking will help with that too. So, but another one that you can use an alternative would be one that kind of goes over your shoulder. So, you’re not having that pressure on your waist. So, it will depend on your symptoms, and your dog but those are a couple options that I like and we can put some links to products after the podcast. But those are useful. I like getting enrichment toys that are easy to clean so it’s not a hassle, things that have larger openings. And then, for grooming, like I have a raised grooming table because it’s harder, it’s really hard in your back to bend over for bathing and for nail trims, things like that, that can be really taxing on your body. So, I have a raised grooming table that I love. And I don’t personally yet have a raised tub. So, if I want to use a raised tub, I usually go to a pet store that offers those. But you can get your own raised tub for pretty inexpensive that can also save your back and other joints. Or, you know, knowing your limitations. Don’t be afraid to have a groomer help you out with things, too, of course.
Cheryl: 1:00:23
Yeah. Delegating that. Oops — this is falling down. Yeah, we have a we’re lucky enough to have a laundry room sink so I can bathe Teddy.
Lauren: 1:00:33
Oh, that’s perfect. Yeah, my smaller dog. I used to have Shih-Tzu’s and we would bathe them in the state sometimes to save our backs. Yeah.
Cheryl: 1:00:42
Can’t really do that with Truman.
Lauren: 1:00:45
Yeah, he wouldn’t mind. But that would be, that would be messy. And then another thing too, that I think is useful managing arthritis and dog ownership, even if you don’t have, even if your dog isn’t a candidate for service, being a service dog or you don’t feel like you need a service dog for public access. There are like some commands you can still teach your dog that might help you out. A couple of my favorite, like if you struggle to bend over, or don’t want to keep bending over frequently, maybe you’re having a bad back day or something, have your dog jump on some sort of raised platform. I personally let Truman on like my couch and things. I know, some people have different preferences, but I’ll ask him to jump on my couch sometime so I can put on his collar without bending over. Or you can train your dogs to put their paws up on a chair to have easier access to them. There’s a harness that I like that has a magnetic closure where you just pull a tab. And some people are like, “Oh, like, magnet. Like, that’s not sturdy enough. My dog will — my dogs too strong for magnet.” But no, this magnet is like, it’s secure. So, we can put a link in the bottom for that, too. I have no connections to endorse these things. These are just my experience with these products. So, I like that. And then, there’s also a product called like the Treat & Train where maybe let’s say you are a wheelchair user, or you’re trying to do some more distance work and you don’t want to be walking back and forth as much. That can be something that you can use, too, on teaching, giving your dogs treats without bending over a lot or using your hands as much.
Cheryl: 1:02:30
That’s great. Well, thank you for those. And I know that, you know, that people will probably have follow up questions for you. So, we’ll make sure to share your social media links and such later. But it’s time now for our rapid-fire questions. So, the first one is would you do anything differently if you were diagnosed today?
Lauren: 1:02:53
Yeah, if I could, the number one thing I would do is, you know, start using Arthritis Life resources. So, maybe the best thing that you could do would be doing Rheum to THRIVE. And like anyone listening, Cheryl did not tell me to say that. I seriously think it is like such a valuable resource that, like, if I could go back, that would be the first thing that I would do. Because again, you’re not seeing this information, you’re not having either toxic positivity or going down, you know, to negative routes either. So, that’s the main thing. I think the other thing, too, is knowing like, I think it can and, you know, it can get better. I think for me, I was like, oh, this is bad now and it can be — it’s, you know, a progressive lifelong condition, it’s just going to get worse. Or how much worse will flares get? And like, for me, my life has improved so much since my diagnosis, like you will think like, oh, you get diagnosed and then that’s it’s bad, but my life has gotten so much better since then. So, that’s another thing I would like just tell myself if I could go back in time and say that. Those are the main things that come to mind.
Cheryl: 1:04:00
Well, and that’s you kind of got two questions with one, two birds with one stone because I was going to ask the best words of wisdom for newly diagnosed but I guess you covered that. Is there anything else you would want to say to a newly diagnosed patient?
Lauren: 1:04:13
Yeah, I think just knowing that change can be, you know, slow and it takes time. It’s not always going to be linear. So, you might get better, then you might get worse. Medications might work and then they might lose efficacy. And so, it’s kind of like, you know, just keep swimming. Just keep swimming. Do what you need to do to keep going. Even when that’s overwhelming.
Cheryl: 1:04:39
Yeah, I love, I love that, just keep swimming. Do you have a favorite arthritis gadget or tool in your toolbox?
Lauren: 1:04:46
Yeah, so it kind of it varies depending on my needs, but I love my heated blanket and heating pad. Like, that, like I tend to be heat sensitive when the air is hot, but like otherwise, like that heat, that warmth, that gentle warmth feels so good on my joints, and then muscles, if they end up getting stiff, so that’s lovely. I have found that when I’m flaring and like if my shoulders or back is making it more challenging to get dressed, using like, stretchy sweaters. Like I’m feeling good today, but I am wearing a stretchy sweater. It’s so much easier to put on and so cozy. Things like that, anything a little bit oversized to take on and off can be easier. I like to use the Notes app in my phone to prepare for appointments, because I think, like we’ve talked about earlier, maybe not on the podcast, but it’s like sometimes, when you do get better and get out of flares you forget when things are worse, or you might like have questions that you forget. So, taking those as notes on your phone can be a quick and accessible way to like bring those up in appointments later. Making sure to pace myself by taking breaks as needed, especially to like get up and move. So, like exercise snacks. I think a lot of people think arthritis and they’re like, “Oh, so like it’s hard to move, right?” And it can be. But like, in my experience, it’s like that movement helps significantly. And so, it’s hard because you’re getting mixed messages from your body. Like your body might be saying, “Oh, I’m stiff, this hurts, don’t move,” or, “Oh, I’m fatigued, don’t get out of bed.” Whereas that movement, and then you know getting out of bed can actually help that pain and fatigue. At least when you’re, you know, more controlled on medications. If you’re not, then it can be a different story. And you, then you can push yourself too hard with exercise and make symptoms worse. But those exercise snacks, you know, making sure I give myself plenty of time in the mornings, especially because mornings can be harder. Those are I think my favorite strategies and gadgets and things.
Cheryl: 1:06:56
Love it. Do you have a favorite book or movie or show you’ve been consuming recently?
Lauren: 1:07:02
Yeah. So, I have a whole stack of books that I would love to get to. I love learning new things. And then, also books could be a nice escape when life gets hard with chronic illness, but I’ve been so busy with school and things that I haven’t been able to get to my pile of books as much I do hope to soon. Mostly textbooks lately, honestly.
Cheryl: 1:07:25
Yeah I don’t miss — I mean, I love learning about arthritis. But learning about other stuff that you’re not interested in can be challenging as well.
Lauren: 1:07:34
And I think there’s also a difference between saying that you have to read X, Y and Z chapters, versus like reading a book that you just want to pick up and learn more in that moment, more spontaneous. So, yeah.
Cheryl: 1:07:46
Do you have a favorite book?
Lauren: 1:07:48
I don’t know that I really have a favorite off top of my head. There’s one book on my list right now, something about like, sharing your stories like September letters or something. I have no idea if that’s good or not, but it sounded good. So, I got it. That’s kind of my next like to read, I think. I also love reading dog books. I’m such a dog nerd.
Cheryl: 1:08:09
Oh, my gosh, I remember one of the best dog books I read was like ‘The Other Side of the Leash’. And it’s about, like, it’s about human behavior. Why do we act the way we do around dogs? And like, how do dogs interpret that? Like —
Lauren: 1:08:22
Yes, that was so cool.
Cheryl: 1:08:23
Such a good one. It’s about how we’re like primates. And we’re so like handsy and like, dogs don’t like, are not exploring the world that way. But like we still can’t help us being like, yeah.
Lauren: 1:08:34
So much of dog training is training the human, honestly.
Cheryl: 1:08:38
Yeah, that’s what I’ve heard. Oh, do you have a favorite mantra or inspirational saying that helps you?
Lauren: 1:08:45
Yeah, so not necessarily directed specifically for arthritis, although it can be interpreted in that lens. But I love the saying like, ‘We rise by lifting others’. And I think that can be relevant, like in our case with, you know, what we try to do with helping people with rheumatic conditions thrive. We, I think help, you know, we we lift others up in that. And so, I think that helps, at least for me, that helps me, also it brings me more hope. Yeah, so I just like that saying, ‘We rise by lifting others’.
Cheryl: 1:09:22
I love that one. And then, what has been bringing you joy right now?
Lauren: 1:09:27
Yeah, so of course Arthritis Life brings me joy. My friends and family bring me joy. Sometimes schools can be, it can be a lot of work, but being able to work towards a career that’s so meaningful, it’s meaningful to me, and that brings me a lot of joy. And then, of course, dogs in general, but especially Truman and spending time with him. Training, cuddling, whatever. That and then talking about dogs, that all brings me so much joy, too.
Cheryl: 1:09:54
Oh, that’s the best. What does it mean to you to live a good life and thrive with rheumatic disease?
Lauren: 1:10:02
So, thriving with rheumatic disease, I think finding joy in the little things sometimes. I think when you are going through a lot of hard symptoms, it strips so many things away and makes you see things in a different perspective of just how meaningful it is to, you know, make a cup of coffee or to pet your dog or, you know, again, you know, just taking a walk, any of that. It means so much more when, you know, how hard it is when you struggle. So, I think appreciate the little things, and showing up for yourself on good days and bad days. And so, that means, you know, if you’re having a good day, you know, doing school, life, whatever. But if you have a bad day, try not to be too hard on yourself. Giving yourself a break if you need. And taking care of yourself in a way that helps you to be resilient and bounce back.
Cheryl: 1:10:57
I love that. I have to remember that every day.
Lauren: 1:10:58
And I think also on that same note, I just thought of another thing. Thriving with rheumatic disease also, I think, means not giving up on your passions. Because, you know, for me, at a time where I could decide on so many things about my future, I was able to keep pursuing what I was passionate about despite that. And for me, that felt like thriving. Again, I know we talked about like, it’s okay if you can’t overcome things, that’s not a character flaw. That’s not something necessarily in your control. But being able to like not give up despite those challenges. I do think that is something that is thriving.
Cheryl: 1:11:40
I totally, I totally agree. And where can people find you online?
Lauren: 1:11:47
Yeah, so I am not online a ton right now, just because life gets so busy except for mainly I’m online on Instagram. So, I have my own Instagram account that I post anything from, you know, big life things to little life joys, pictures, usually. And then, I have a dog Instagram as well. So, right now it’s Truman focused, but I hope to eventually, as time permits, do more videos on that and maybe even incorporate a life with disability or like to thrive with arthritis, with dog ownership, and things like that.
Cheryl: 1:12:31
That’s such a huge area. And your Instagram is @LaurenHuffman16.
Lauren: 1:12:37
It is, yeah. And then, my dog Instagram is @Trumanblue_andfriends. Sometimes I’ll post other dogs and things on it.
Cheryl: 1:12:47
Oh, okay, yeah. Okay.
Lauren: 1:12:49
But I do think the dog world is so, so cool, too. Because people can do dog sports at any age. And even with disabilities. I’ve seen people do even agility. You might think like, oh, you have to run alongside your dog and be active. But you can teach your dog distance work. And I’ve seen people in wheelchairs do agility still, so it’s just cool to see what’s out there.
Cheryl: 1:13:13
Well, thank you so much for taking the time to share your story here. I know that even though I know you’re really passionate about it, it still takes emotional labor to go through all the details of your diagnosis journey and what you’ve been through so and, you know, I know that the occupational therapy profession is lucky to have you. So, thank you so much. And hopefully people will follow up with you if they have more questions, or they can always find all — by the way, I’m trying to say this more so people know. On every episode, there’s a page on my, or there’s a post on my website for every episode that has the full transcript and a link to the YouTube video. So, you can, if you’re interested in like watching the video of us talking and our dogs. And you can also see all the links that we’ll put.
Lauren: 1:14:03
Yeah, we’ll put links to helpful products and things like that, so.
Cheryl: 1:14:09
Well, thank you so much. Bye-bye for now.
Lauren: 1:14:11
Bye. Thank you.
