Summary:
In this episode, Marisa shares what it was like to be diagnosed with rheumatoid arthritis around her thirtieth birthday after thinking her wrist pain was only carpel tunnel syndrome. She opens up about her mixed emotions after her diagnosis and shares what helps her cope and thrive, including burlesque dancing, group fitness, the Rheum to THRIVE support group program and more. The episode concludes with a discussion about how Cheryl and Marisa learned to be kind to themselves and less judgmental.
Video of Discussion
Episode at a glance:
- Diagnosis journey – thought it was carpel tunnel in both hands, turned out to be RA, diagnosed around her 30th birthday.
- Emotional response to diagnosis: mixed feelings, bittersweet – partly relieved to have answers, but frustrated about not being able to do what she used to. Went down google “rabbit holes” and got overwhelmed
- What helped her adjust and thrive: joining Rheum to THRIVE for more credible information and support from others going through similar things
- The role of fitness: Marisa explains how her work as a group fitness instructor and her fitness habits help her manage her RA symptoms, mood and stress.
- The role of burlesque dancing: Marisa joins a local burlesque dancing group and connects with her body in new ways
- Learning to be kinder to herself: Marisa shares how through therapy and Rheum to THRIVE she learned to be less judgmental of herself and more compassionate.
- Tips for Work with RA – Marisa shares what helps her work full time
- Rapid fire questions
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 empowerment program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Learn more here!
Speaker Bios:
Marisa Levy:
I’m a young professional, living in Atlanta, GA. I was diagnosed right around my 30th birthday (happy birthday me). I am also a group fitness instructor/enthusiast and work a desk job that requires a lot of typing.
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- Health at Every Size: https://asdah.org/health-at-every-size-haes-approach/
- Kitchen Mama Can Opener
- Rheum to THRIVE support group program
- Marisa’s links:
- Cheryl’s Arthritis Life Pages:
- Rheum to THRIVE – information page for course + support group
- 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:
Hello, I’m so excited to have Marissa here today. Welcome to The Arthritis Life podcast!
Marisa:
Thanks. Thanks for having me.
Cheryl:
Yeah. And can you let everyone know just a quick intro, like where you live? And what is your relationship to arthritis?
Marisa:
Yeah. So, I’m Marissa. I live in Atlanta, Georgia, and I was diagnosed with rheumatoid arthritis in September of 2020.
Cheryl:
Yeah, so you’re one of the people that deserves an additional like, warrior badge for getting diagnosed during the pandemic.
Marisa:
Yeah. Yeah.
Cheryl:
That’s rough. So, yeah, I would love to just jump right into your diagnosis story/saga. Yeah.
Marisa:
Yeah. Luckily, it wasn’t too much of a saga. So, right around — I don’t know, maybe it was like March or April. So, like, early on, in the pandemic, I started noticing some signs of just that, you know, working a desk job, it was a little bit more difficult to do my job when, you know, my wrists were bothering me. And I started noticing some symptoms in my hands. And so, I talked to my primary care physician about it. And he said, like, “Oh, it’s probably carpal tunnel,” a lot of people, you know, now that we’re moving to working from home, and may or may not have a good setup, a lot of people are noticing, you know, symptoms of carpal tunnel. And so, I had bought a wrist brace. And I slept with it at night and tried to use it during the day.
And so, I did that for probably about a month or so and then still was having symptoms. And my primary care physician referred me out to an orthopedist who took some X-rays. And so, since it’s both hands, they also X-rayed my neck. And that was like, a very, that was a little scary. Not the actual process, but just the thought of like, oh, no, what’s going on in my neck. But the X-rays were fine. The orthopedist also thought that it was carpal tunnel and sent me to get — what is it called — a nerve test? It might just be called a nerve test, where you feel like you’re being turned into a robot. And you have these like, electric pulses that are sent along various tendons and the sword through your arms. And that also suggested that it was carpal tunnel, so then I go to the orthopedist again, and they wanted to cut open my wrists and do a — I forgot what it’s called. There’s some surgery to release that.
Cheryl:
I think it’s like, I think that nerve test is like the nerve conduction test.
Marisa:
Yes. Yeah, yeah.
Cheryl:
And then it’s carpal tunnel release surgery. But was it, just to clarify, was it both hands and wrists or was it just one?
Marisa:
Yes.
Cheryl:
Okay.
Marisa:
It was both. And so, that would require me to take off from work for two weeks, and essentially not really be able to use my hands a whole lot. And so, you know, I was willing to do it if that’s what was needed. But along the same, around the same time, I started noticing like, my knees were also not happy. I was having some pain in my toes. And my elbows, or really, my big flare — joints that are prone to flaring. And so, at that point, and I was at this point, feeling very frustrated because I had started doing yoga, over the pandemic, and there were days where, like, just being in table position tabletop were just not happening. And so, I was discussing a lot of these frustrations with my therapist who has a relationship with some autoimmune diseases herself, which is really helpful. Not that I learned that she has these autoimmune conditions, but it is helpful to have somebody listening to you that that has firsthand experience. And so, she encouraged me to get, you know, a second opinion and to see a rheumatologist to see if, you know, this was something that was in fact autoimmune or if it’s, you know, just so happens to be coincidental and I have carpal tunnel and my joints just hate me.
So, lo and behold, I see a rheumatologist that my primary care physician referred me to, and she’s great. And sure enough, it’s rheumatoid arthritis. And I got the official diagnosis pretty close to my 30th birthday. Which was some birthday present from the Universe — didn’t love — and started on… Oh, I think I did some like prednisone, and I don’t remember what. I guess we went straight for the biologics, because I was a little bit — she was hesitant and I was hesitant about going for methotrexate just because, you know, I’m hoping to have kids soon in the next few years, and she has a lot of patients, you know, who are younger and get frustrated by not being able to drink. And there’s a lot of other just potential, I guess, side effects. And so, we started on HUMIRA. And that was a whole, the whole process to get approved and whatever we could talk about that. But yeah, so, I mean, all in all, it’s probably about six-ish months from the onset until I was diagnosed. And from, you know, my experience in the Rheum to THRIVE group and reading Reddit. Like, that is pretty unusual.
Cheryl:
Yeah, it usually takes — well, it depends how severe and how quote-unquote ‘textbook’ your symptoms are. It can be faster or slower. But for a lot of people, it takes over, you know, a year or two so. So, and I think, yes, some of the telltale signs are that it’s in more than one joint, that see that symmetrical — both sides of the body are affected — that it seems to be, you know, the patterns would be also like worse in the morning, worse after activity, you know, better with activity. And then, did you also have the systemic symptoms, like fatigue or anything?
Marisa:
Yeah. Yeah, there was definitely some fatigue. But I, you know, also was going through global pandemic. It was a little hard to discern what is due to RA and what is due to the state of the world? I’m trying to think of other systemic —
Cheryl:
Did your fingers hurt, or was it only the wrist?
Marisa:
Oh, my fingers hurt.
Cheryl:
Your fingers hurt too, because carpal tunnel just alone can be usually the wrist, not as much. — I mean, it can be the fingers too, but because all of the — there are a lot. There’s like 30 different muscles in the hand, like half of them originate above the hand, like in the forearm and go through the carpal tunnel into the hand. The other half originate in the hand. So, but you know, long story short, yeah, the fact that it was — I’m really glad that your therapist, your mental health therapist, suggested it because, first of all, she saved you from a potentially unnecessary carpal tunnel surgery.
Marisa:
Yeah. Yeah.
Cheryl:
And that, you know, the fact that it was kind of travelling throughout the body to different joints. That’s definitely not — carpal tunnel is just in the wrist, in the hand. So, yeah, I’m glad. I’m glad you got your diagnosis, even though six months is a long time when you’re in pain.
Marisa:
Yes.
Cheryl:
It’s, yeah. Yeah. And what, you know, after thinking that initially it might be carpal tunnel, which is something that’s like a quote-unquote, you know, ‘solvable problem’, not a chronic lifelong illness. What was your emotional response to getting it? You were saying that you weren’t very happy to get this diagnosis right near your 30th birthday. Can you walk me through your emotional journey?
Marisa:
Yeah, I mean, honestly, when I was diagnosed, it felt very conflicting and bittersweet in a way. Like, I was so frustrated in not being able to do the things I wanted to do and having sort of like a question mark over ‘What is happening to my body?’ that having any sort of having any sort of framework or diagnosis or just direction at all was like, a relief, even if it meant like, obviously, you know, having a chronic illness. But then, at least we can take steps and figure out what to do. And I remember spending a lot of time with my therapist just talking about that uncertainty, that like, even if it’s, you know, something chronic, at least then we know what the steps are. Like, is it going to go get the carpal tunnel release surgery, is it seeing a rheumatologist? Like, it at least narrows down the options that you’re considering? And I’m very action-oriented and task-oriented. And so, that was huge, like, a win in that sense. But it was also, I think, for a long time, it was definitely a struggle to find, I guess, avenues where I could talk about these things. Because obviously my boyfriend is, you know, supportive of me and wanted to be encouraging and supportive. But, you know, he doesn’t — he doesn’t have rheumatoid arthritis. And so, I think that was why, early on, like, once I had a name, finding groups like Rheum to THRIVE were so helpful for me to just feel like I’m not alone.
Cheryl:
Yeah. Well, yeah, thank you for sharing that. And it’s true. No matter how supportive your friends and family and, you know, romantic partner is in everything, there isn’t really a substitute, in my experience, from having people who’ve truly lived through what you’ve gone through. Everyone has a different role to play. But yeah, I’m glad you made your way to, to the group. And yeah, what were some of the highlights, I guess, highlights of being in Rheum to THRIVE now that we’re talking — now that we’re on that topic, because I always want to share about it.
Marisa:
Yeah. I mean, honestly, just having more information that was like, credible. I think, you know, in the early days, I would spend a lot of time on Google. And some of it is helpful, but like, reading a lot of Reddit posts, and like worst case scenario and best-case scenarios, and very anecdotal evidence is not necessarily the most helpful, and you end up going down a rabbit hole for a long time. And so, just having, you know, some more, I guess, knowledge and hacks. And again, with like a framework and figuring out, you know, what works, what doesn’t work, and why is this happening was really helpful. And then, I think having that along with like, the non-scripted, just having a support group and having the marriage of those two things, I think is really important. I don’t know that it would have been as impactful if it was just one or the other.
Cheryl:
Yeah, I’m glad. I’m glad you mentioned that. Because I it is two different kinds of appeals for people. Like, some people are like, I just want a tour guide person to like, help me sift through all this overwhelming information. But other people are more enticed by the idea of having a support group. But it’s nice because when we talk about the practical tips and tricks and like making sense of the evidence out there that can be so conflicting, like about, you know, exercise, nutrition, all that stuff, it helps anchor the support group. So, that we were initially like, hey, let’s talk about how the ups and downs of when you try a new exercise program, and it either does or doesn’t work. And then, you know, you’re not just having like a free-for-all support that you kind of start on a topic that everyone shares together, and then you kind of expand from there. So, yeah, no, I’m so glad.
Yeah, I’m really happy with how the groups have turned out. And it’s funny, because when I first started it, I was thinking about, like — this was like 2019 when the idea was like germinating, and I was thinking, being of course, back then, you were thinking about everything being in-person, you know. So, it’s been really interesting over the pandemic to do it virtually, and see how that support — there’s so many benefits of having it online, right? When we’re tired, right, you can kind of, you know, you can turn your video on or off, like, kind of lay down and kind of zone in and out of the group, or cook your dinner while you’re being — or rather, yeah, I don’t know. I think it’s been really, it’s been really cool.
And I know that I mentioned exercises. I also wanted to give you a time to talk about, you know, the role that fitness has played, because I know that’s something that’s been really important for your overall, disease management. How did you get into that?
Marisa:
How did I get into fitness?
Cheryl:
Yeah.
Marisa:
So, I’ll spare some of the long details. But so, growing up, I’ll say this, you know, it wasn’t super — I wasn’t a fan of gym class. And that was, you know, pre-RA. And so, I went to grad school. And in grad school, I found it to be just a really cathartic experience to go to a group fitness classes, and I fell in love with group fitness. So, I got certified to teach group fitness. And then, the pandemic happened and I didn’t want to be around a bunch of germy college students because I taught at a university rec center. And so, during the pandemic, I would say, there was definitely a large shift for a lot of reasons. Like, given the pandemic, given my RA diagnosis, and using that time to become comfortable with modifying and, you know, being in my own home, I think was really helpful. And as things have opened up, it’s — I mean, I’ll be honest, I think it’s been challenging to consistently remind myself that like, it is okay — in fact, encouraged — to listen to your body.
And so, you know, some days, I might not be having a good rest day. And so, if I’m attending, if I had signed up for a class, you know, that might mean that I have to modify. And I will also say, I think, especially given my diagnosis, like, I am very discerning when it comes to going to new classes and new teachers. So, when I find spaces that I feel comfortable in that whose teachers automatically and instinctively know, to provide modifications, and where I feel accepted — so, strange word — but where I feel like I can be my best, whatever it is that day. Like, I’ll continue going back to those places. And — what was just gonna say — yeah, and I think the other thing too, in terms of like modifications and moderation, I’ve gotten a lot better about knowing myself. And so, you know, that might mean like, not scheduling a seven o’clock group fitness class, and then expecting to be able to do an 8am group fitness class the next day, you know. And just keeping that in mind has been really helpful. I don’t know if that answers your question sufficiently.
Cheryl:
No, that’s great. And are you still teaching group fitness now or more participating in the class?
Marisa:
Yeah. So, yeah, I took a break. But I actually — this is like breaking news. And I hope I don’t jinx it. But I did recently audition at a fairly young group fitness studio in Atlanta, that focuses on like the Health at Every Size paradigm. And so, that sort of philosophy fits in well with how I view myself and how fitness fits into my life. And so, I haven’t scheduled any classes yet, but and that goes back to what I was saying before about attending classes. Like, I make a very conscious, intentional effort to go to places that I feel supported. And that goes, the same is true for for teaching in spaces. I don’t know that I could teach at a, like your cookie cutter style gym.
Cheryl:
Yeah, yeah. And I’ve heard of the Healthy at Every Size, or Health at Every Size. But can you describe for people who haven’t, what does that mean?
Marisa:
Yeah, I mean, the idea is that just because you are overweight or, you know, your body is a certain size or certain shape doesn’t mean that you’re automatically like, for some reason, the word ‘blacklisted’ is coming to mind. That you can be healthy, and you can be healthy at every size. And it the idea is to be more inclusive. And not focus solely on the numbers on the scale. And to, you know, pay more attention to your body and how it feels. And I think that that’s a philosophy and a sentiment that I think, no matter your weight, is important, you know. You’ve only unfortunately got one body, so you need to be able to take care of it and listen to your internal cues.
Cheryl:
Yeah, yes. And it’s so important to recognize that, that yeah, there is not a perfect correlation between — I mean, there’s not a great correlation between, like, you know, BMI, like body mass index, and overall health. I mean, when I was my thinnest as an adult, I was my sickest. It was right before I got diagnosed with RA and I experienced severe weight loss and muscle mass. Because it’s called rheumatoid cachexia. And, you know, oh, yeah, well, I’m on the BMI — okay, probably at that point, I was technically underweight. But you know, they’d be like, “Oh, she’s not, she’s not super unhealthy because she’s not overweight.” You’re like, okay, but actually, my body has been like, ravaged by inflammation, and that’s not good. There’s a whole psychological element to it, too. And I, as somebody who’s always been and kind of thin, I can’t speak from personal experience, but I think it’s a wonderful thing to say like, you know, everyone should be included at a gym; everyone should feel that they can participate. So, I know I’m preaching to the choir, but it’s not just you have to look a certain way to —
Marisa:
Exactly.
Cheryl:
Yeah, to do dance class or, you know, swimming, or yoga, or anything like that. So, I think that’s awesome. I support this movement. You know, and what effect have you noticed does your fitness routine have on your RA? Like, do you feel — it’s hard to correlate, right, one to another. But some people feel overall, you know, that their fatigue or their sleep get better when they exercise.
Marisa:
Yeah. Yeah, I mean, I — yeah, I feel there’s obviously some co-morbidities. So, you know, I have sleep apnea and recently, a few months ago, got a CPAP machine. And that has made such a huge difference. So, it’s hard for me to say what amount of sleeping better is, versus, you know, exercising. But I will say that sleeping better has allowed me to be more active and attend, you know, more classes that makes sense, that I feel welcomed in, and that I can modify. And they feed into each other that way. So, I guess the short answer is, you know, I feel it’s all sort of related. And I think even, even nothing — if nothing else, I think the movement and having a social outlet is super helpful for my mood. And I think it can all be super helpful. Like, even if I’m having a flare, you know, depending on like, so I take some classes that are cumulative, so a flare alone won’t necessarily stop me unless, of course, it’s like, I guess super, super bad. But luckily, knock on wood, I haven’t had one that’s so bad that I haven’t been able to attend. But just being able to make a mental note, like to modify.
Cheryl:
Right, right.
No, I’m really glad you mentioned mood because yeah, so often, when people hear, “Oh, you’re supposed to exercise if you have rheumatoid arthritis,” they think about it, it’s like, oh, it’s going to help, you know, build muscles and support the joints, which is true from a mechanical standpoint. But really, the mood, for me, getting those endorphins, it also helps. It gives me an energy burst. And, you know, it helps with mental health for me, personally. So, I think that’s something to not be overlooked when people think about exercise and fitness. And when you say a group fitness class, what are some of the kinds of exercises that you do in the context of the class? Like, is it like, do you do it to music, or do you — are you like stepping, like step aerobics, or some form of mishmash?
Marisa:
Yeah. Yeah. So, normally I do classes that that do teach to the beat. When I’m teaching, you know, it’s part cardio/part sculpt, so part of bodyweight exercises. I haven’t taken a step class in a long time, but I did pre-RA. Really liked them. I’m not sure — I don’t know if I’ve taken a step class since my RA. And I don’t know how my body would respond to a step class. Just because it’s a little bit more obviously like, knee intensive.
Cheryl:
Steps where they have a little like, board — not board but like, a rubber step in front of you. Step up, step down; step up, step down. Yeah, just wanted to say if people listening that might not have seen it.
Marisa:
Yeah, and I love step classes and I think they’re great if your knees are not a problem joint for you. But yeah, I don’t know how that would go over now. And I also take — I also take burlesque classes as well. And that has actually been, I mean, I’m taking them for a lot of reasons but that has been really helpful because it’s definitely a workout but because it’s burlesque, it is a slower movement just by the nature of it. And so, it doesn’t feel like as taxing on the body even though there are certainly classes that have been difficult.
Cheryl:
Yeah, I think of burlesque can — and I only know of burlesque from being a swing dancer, but it can also really help you feel in touch with like your, you know, sexy side for lack of a better word, which often, when you start labelling yourself as like, ‘I’m a person with a chronic illness’, you sometimes feel like that doesn’t go together with being, you know, somebody desirable, so that can be a benefit. I’m going to stop for one quick second. But I realized I forgot to actually define for people who might not have heard of it, what is burlesque?
Marisa:
Yeah, so I think there’s a lot of — hold on — there’s a lot of different types, I guess, or styles. But it’s typically done with the intention of, you know, the art of the tease. And so, it’s more sensual and sexual, though it’s not necessarily explicit. And so, for some, you know, for some people, or some numbers that could look like, you know, just like a slower style of dance. I’ve attended a show, where, you know, some of the performers will start off with like, a big feathery sort of dress. And then, as the performance goes on, they remove the dress and then they’re like wearing like pasties and some sort of like, underwear and there’s certain, depending on where you’re performing, there are certain laws, like blue laws, about what you can and can’t show and that’s like a lot of the things that I didn’t realize until I had started taking the classes.
And so, I say that to say that it’s not necessarily inherent or required to remove clothing as part of the dance. And what else was gonna say — and I would also say that I think it’s like sexual, like lyrical dancing, is sort of my take on it. I think there’s, yeah, there’s a lot of like some classes or some routines might use a chair as a prop, other classes or choreography might include some floor work, some classes may have neither. And yeah, I just, it’s one of those things that I was interested in and there’s a studio not super far from my house that has classes. And it’s like a very explicitly inclusive studio and welcomes all shapes and sizes and, you know, I’m in a plus size burlesque class and as well as a level one class. And it’s just been, yeah, I think it’s just been like really encouraging, I guess, for me for a lot of reasons. But yeah.
Cheryl:
I love that. And there’s a little bit of overlap between like the Lindy Hop and swing dancing community and burlesque, because I think historically, they might have like, they were ‘invented’, for lack of a better word, around the same time. But yeah, I think there is something really neat about being able to connect to your body.
Marisa:
Yes, yeah.
Cheryl:
Connect to the music and yeah, I think it’s cool. So, maybe that will inspire other people to to do that. Because I think, you know, a lot of times, people, when they’re, again, recommended to exercise with rheumatoid arthritis, they tend to think straightforward, like, “Oh, I need to join a fitness class,” which obviously, group fitness can be super helpful. But you also can get some of the same benefits from dance, you know, that cardio and that stretching and that’s strengthening. Strengthening, it can be a little harder to get. But you know, I think about when I did Lindy Hop and did a lot of Charleston, that is strengthening in your quads because you’re like, hopping.
Marisa:
Oh, yeah. Uh-huh.
Cheryl:
Kicking, hopping, kicking, hopping. It’s like basically like step aerobics without a step. So, yeah, I wouldn’t minimize the impact that that dance can have. I really want to have an arthritis dance party, sidenote. It would be really fun. And on a totally different note that may be overlapping, I always like to talk about emotions and coping and, you know, before we recorded you mentioned you’ve been learning how to be less judgmental of yourself and take it slow, and kind of just do things to help you come to terms with this rheumatoid arthritis life that you’re in now. I would love to just hear more about
Marisa:
Yeah. I mean, I was, I guess, fortunate in a sense, you know, I’ve been in therapy for a long time. So, like I’ve sort of alluded to or mentioned earlier in this recording, you know, my therapist was really influential and impactful during the whole diagnosis and prognosis journey. And I think having my therapist and having the Rheum to THRIVE group really helped me process some of those feelings. And I also, I think, I haven’t done it in a while. But when the pandemic first started, I was also meditating very regularly. And so, I think that that was also helpful just to give myself space to process. But in terms of — where was I going with this? I swear, I’m getting somewhere.
Cheryl:
Learning to be less judgmental of yourself, take it slow.
Marisa:
Oh, yeah. Yeah. I think — I think that, for me, like, I guess this isn’t silly, but, like going to group fitness classes and sort of rediscovering fitness, both in the sense of post-pandemic — if we can be considered post-pandemic — but also in a sense of post-diagnosis, I think going through that practice and finding ways that to move my body that feel good is also really affirming for me from an emotional standpoint. To like, to recognize that I’m not, that I’m not broken. Like, my body still works. It’s just, you know, for some people, even without RA, you know, they may have bad knees or maybe they were previously in a car accident or what have you. I say that because similar incidents happened and in burlesque class, but my point is, like everybody has some sort of flaw, if you will, or problem area that you either have to work around or work through. And I think, for me, going through and rediscovering fitness has been — what’s the word that I want — I don’t know, cathartic, in that sense. I can’t think of words, but I’ll just leave it at cathartic.
Cheryl:
Yeah, I totally can see that. It really is an evolution a lot of people go through, where at first, you’re like, “Oh, my body’s broken,” you know, “And the only way for me to love my body again, or to move in a way that feels good would be to cure or heal the condition.” And so, like, that’s the barrier, as opposed to realizing, oh, like you mentioned, you know, there’s often some sort of barrier. It could be an aesthetic barrier. Like, for me, prior to my diagnosis, I’ve always struggled with my posture. I hunch my shoulders forward, it’s always — like, I always felt with starting Lindy Hop and swing dancing. I was like, “Oh, some of these girls have such beautiful posture and like, it’s really hard for me. It seems so effortless for them.” You know, we all have something. So, yeah, realizing you can like, I’m thinking of my own therapist, where it’s like making space.
Marisa:
Yes.
Cheryl:
For rheumatoid arthritis. Yeah, alongside you, rather than seeing it as separate.
Marisa:
Yes. Yes. Yeah.
Cheryl:
That’s beautiful. It’s a beautiful thing when you can do that. And I forgot to tie the loose end of the treatment plan. So, sorry just to go back like 30 minutes, but you mentioned you started HUMIRA. Is that working well? Are you —?
Marisa:
Yeah. So, I think it’s worked. I’m still on HUMIRA and sulfasalazine. Not to give these drug companies more money, but, I mean, it’s working. I don’t know that it’s working as well as it could be. And so, there’s probably some room to play with in that space with my rheumatologist. But I will say, I was a little, not necessarily scared, but I wasn’t sure what to expect with an injection. And, you know, I worked with the nurse ambassador, I think they’re called, through AbbVie, who I guess made video calls. I don’t know how we would have done this through a phone call. I think we had a video call for my first injection and that was really helpful. And so, it’s not super scary anymore. And so, I’m open to trying a different injectable.
Cheryl:
Did you use the pen? Is it the auto-injector pen? The manual pen — okay.
Marisa:
Yeah, it’s an auto-injector. And I’ve also previously been on Plaquenil along with HUMIRA, and that led to some GI issues. And I’ve done short courses of prednisone when it was super bad in the early days, just to get it a little bit more —
Cheryl:
To put the fire out, yeah.
Marisa:
Yeah. Yeah, to put the fire out, so to speak. But, yeah, I feel like I’ve become more talented at saying lots of long drug names. So, I guess that’s a benefit.
Cheryl:
Yeah. And I think what you said earlier, it really stuck with me, what you just said that you were — and I don’t want to put the words in your mouth wrong — but basically that it’s working, but it’s not perfect. Like, you’re not in a clear medicated remission, but you’re not in a horrible flare-up. And it’s really hard to know what to do in those times. Because you’re like, well, if I switch to a different biologic, it might work better. But it might not work as well. And then, I wish I didn’t switch. I find that uncertainty really hard for me to cope with. Do you also?
Marisa:
Maybe, to some extent. Like, I haven’t, you know, I’ll be honest, I have obviously very limited knowledge of other biologics, because HUMIRA is the only one I’ve taken. But I think, I think now, obviously, you know, hindsight is 20/20. But it’s a lot easier for me to reconcile, like, okay, if the next drug, let’s say it does nothing. Like, what is the worst-case scenario we’re looking at? And I’ve, I have felt that previously, right. Like, I would imagine that that would be akin to my completely untreated RA. And while it sucks, like, it’s definitely not fun, I think, knowing like, sort of the range that we’re playing with helps me mentally feel a little bit more prepared for what, you know, what is reasonable.
And I think the other thing, yeah, and I think the other thing, too, that I have the privilege of is, you know, with by rheumatologist, I have never felt like it was a one-way street. And she is very — like, it is a conversation and we’re talking, discussing it together. And so, I feel supported. And I think that that’s, you know, this is something that we have talked about in the Rheum to THRIVE group a lot is like, being your own advocate, and how do you handle physicians when they’re not necessarily doing that? And so, you know, for anyone who’s maybe listening and feels that way, I would strongly suggest like, you have a choice in the matter, for the most part, of who you want to work with. And if they’re not, if they’re not meeting you halfway, like, it’s no different than you being the customer and going to a pizza place, and they’ve messed up your order. Like, it’s okay to say that they’ve messed up your order.
Cheryl:
Right.
Marisa:
Yeah. I don’t know if that, yeah, I don’t know if that resonates, but.
Cheryl:
Oh, no, it definitely does. And I think, you know — there’s a phrase for it, and it’s slipping my memory at the moment — but there’s a like, a phrase in rheumatology for that patient-provider relationship and how, you know, patient outcomes are better, based on research, they’re better when it’s a collaboration and collaborative experience, a conversation between the patient and provider, not just like the provider, aka the doctor, being the voice of God saying, “You must take HUMIRA, you must take this.” So, it’s more like, okay, treating you as an actual human and having a human conversation, and then explaining to you the pros and cons. Like, you know, I’m on my fourth biologic now. So, it is a really like, it’s a more longer back-and-forth conversation, because the more you get down the road of different biologics, it’s like the research is catching up, right? Because for like two decades, and for some people, they’re on one for like 15 years. So, it’s like, initially, we had a more of a data base to go from but now it’s a little bit more of that art. There’s an art and science to the decision making. And she really listens to me. And it’s more like, okay, to kind of figure out like, am I going to be more of a risk taker? Like, oh, this medicine like, ‘high risk, high reward’ kind of thing, versus am I gonna go conservative?
And anyway, so yeah, you’re describing exactly the ideal, I would say, you know, which was that you said, it’s not a one-way street, it’s collaborative, you know. And hopefully, people listening, unfortunately, there is a rheumatology shortage in some geographic areas. So, if you’re living in a rural area, that can be hard, but one of the best things about telehealth is that you can have better access sometimes, right? So, if you live in like rural Minnesota, or something, you can maybe do a video conference in, you know, for some of your appointments and come in physically, you know, if it’s like a three-hour drive. I should have said Nebraska, like Minnesota is not that rural. But you know what I mean. Yeah, you can do that. So, that’s really, really helpful. And by the way, earlier, you said you were in — what did you go to school for? Sorry, I’m just tying up loose ends from earlier.
Marisa:
I went to school. So, I went to undergrad for neuroscience. And then, I have my master’s in neuroscience from Georgia State University. I don’t know why I blanked on the last word there. But yeah, and so, I had mentioned that during grad school, I spent a lot of time not as like a gym rat, but I definitely spent a good amount of time at the gym across the street. And what else was I gonna say there? I mean, this is like a very, like a footnote, almost. But I do you think it’s interesting that myself and several other friends of mine that I went to graduate school with have later developed autoimmune disorders of varying types. And so, I’m not saying — correlation doesn’t equal causation. I’m just saying that graduate school was an occupational hazard, that’s all I’m saying.
Cheryl:
Well, and there are geographic correlations, like there was a big campaign in the Seattle area, like, you know, why are so many people who — why is the incidence of multiple sclerosis so much higher in the Pacific Northwest? Like, they’re trying to figure out. So, sometimes there can be environmental triggers. So, and I think — oh, I was going to ask about work because I know a lot of people, one of the biggest questions they have when they get diagnosed is, “Am I going to be able to work? How is this going to be able to affect my work life?” Like, I know, you were mentioning your first symptoms were, you know, notable because they were interfering with your ability to work from home. So, how are you managing work with rheumatoid arthritis?
Marisa:
Yeah, yeah. So, that’s a good question. Som I do have like an ergonomic keyboard. That was the first thing I bought with some, like work-from-home stipend that we had. I’ve tried an ergonomic mouse, the one that has like the rollerball, and I really hated it because it just works so differently from a normal mouse. I also take breaks. Occasionally, if I’m having a bad hand day, I’ll use my compression gloves while I’m working, and I am still working full time. You know, obviously, depending on disease severity, some people can work, some people can’t work. And yeah, and I just try to take breaks and make sure that I have water, which I think is, you know, fair enough advice, even if you are totally ‘healthy’, quote unquote.
Cheryl:
Yeah. And I mean, I think most people know that anyone who does repetitive actions, particularly with your hands, is at risk for repetitive stress injuries. So, it’s helpful to do those things even if you don’t have a joint condition. So, thank you. That’s really similar to what I do, too, the ergonomic keyboard and mouse. I like this one upright mouse. I’m similar, I don’t like the ball. I actually think that the mouse for me, personally, with the ball, they actually aggravate my knuckles, which is like the joint, the metacarpophalangeal, which are usually the worst in RA, like, that’s where the most pain is for me in rheumatoid arthritis. So, that’s just my personal — it’s the same thing with scrolling on a touch screen.
Marisa:
Gotcha.
Cheryl:
Like, sometimes I use a stylus if my fingers are sore. But yeah, I know it’s — no one, unfortunately, like with regards to the question, you said, you know, you are able to work full time. Lots of people can work full time, some can’t. And you really don’t know necessarily at your diagnosis, right. You can ask, you know, don’t ever be shy to ask your doctor, “What is my prognosis in your opinion?” you know, the doctors are the ones that see, you know, eight to ten patients a day, “Patients like me, do you think I have a good likelihood?” Because there’s factors that make you have your prognosis better or worse. How mild or severe is your disease? Do you already have some, you know, progression, deformities? Do you have really high blood markers? You know, how are your X-rays? All these things. Do you have a strong family history? Was your family member, did they have more of an aggressive form of RA? So, you know, knowing those things, your doctor can say, you know, “Honestly, in your case, it’s going to be — probably you need to prepare yourself to work part time potentially,” or, “Oh, no, we expect you to be able to work full time,” you know, so.
Marisa:
Right, right.
Cheryl:
Yeah. And so, okay, so I have a fun little section I’ve started doing, rapid fire questions. So, this one is one of my favorite questions, is do you have any, like words of wisdom or encouragement for somebody who might have just gotten diagnosed with RA? I know.
Marisa:
I think, it almost to some extent sounds hypocritical, because it’s definitely something I still struggle with, but don’t be afraid to ask for help. I think that that’s probably number one. There are many times that my partner Adam, you know, has said like, “I’d rather you just ask me,” and quote-unquote, you know, “‘bother me’ for two minutes, then you struggle and get frustrated and upset that you can’t open a jar.”
Cheryl:
So similar to my husband too, and I’m like, “Yeah, I know. It’s just so hard to ask for help.” Yeah, I feel you on that one. Yeah, I hope people take that to heart. And I think a lot of us can be, can get stubborn because I don’t want rheumatoid arthritis to be the reason I always have to have help. It’s more like, it is what it is. Yeah. Make your life easier. Do you have a favorite arthritis gadget or tool in your toolbox?
Marisa:
Yeah, so I promise — I promise Cheryl didn’t tell me to do this. But the can opener from Kitchen Mama has been such a lifesaver.
Cheryl:
The one touch one? Yeah.
Marisa:
Uh-huh. Yeah. Because for a while we were using, you know, the manual can openers, and it got to a point where, for various reasons, I mean, there were definitely cheaper. But that motion is just not great. And having a tool that turns a potentially super painful task into something super duper easy, especially when we didn’t want an electric can opener that took up too much counter space. Like, it’s worth every penny.
Cheryl:
Oh, I know. I love that you can store it under the counter. That was a huge selling point for me too. And I’m not an affiliate. I just, I just like it. And then, do you have a favorite book or movie or show you’ve been consuming recently?
Marisa:
Ah, that’s a good question. I mean, I’m a sucker for like trashy reality television. And so, I promise I have not watched any of the other Bachelor in Paradise seasons. Don’t get mad at me. Don’t come for me. But I am watching the most current season of Bachelor in Paradise. And like, I understand it’s trashy television, but sometimes, sometimes you just need trashy television.
Cheryl:
Yeah, I listen to a podcast called Pop Culture Happy Hour. And well, yes, she’s Linda Holmes. She founded this website that was called, or she would used to write for a website called Television Without Pity. Like, saying that you shouldn’t have to apologise for liking what you like. My husband and I have been watching Love is Blind. And what we do is we literally pause it and we’ll like have conversations about it and be like, “Here’s how it — like, I think she should have said that this way. Like, what do you think? Would that have come across better?” You know, so it’s like we are actually — first of all, it is just mindless entertainment. But it also is like, it can be a conversation starter, to be honest.
Marisa:
Totally. Yeah.
Cheryl:
Love is Blind was all focused in Atlanta, too, by the way. So, yes, here the couples are still married from there, which is awesome. Spoiler alert.
Marisa:
Wait, wait, wait!
Cheryl:
It was like, two years ago. Do you have a favorite mantra or inspirational saying? It’s okay if you don’t.
Marisa:
I mean, I guess, ‘Listen to your body’. It’s not like super — it’s not super like, poetic by any means, but I think it’s one that is important to me, especially.
Cheryl:
Yeah, yeah. That is — it’s a deceptively simple one. It sounds easy, but it’s not. When you live with pain, you get used to not listening to your body as a coping mechanism. So, I totally agree with that. What is something that’s bringing you joy right now?
Marisa:
Hm…
Cheryl:
Taylor Swift’s Midnight? No?
Marisa:
No, haven’t listening to it yet. I will eventually listen to it. I would say, my burlesque classes.
Cheryl:
Awesome.
Marisa:
Yeah, my burlesque classes.
Cheryl:
You’re inspiring me to sign up. And then, my last one. What does it mean for you to thrive with rheumatic disease?
Marisa:
I feel like this is like a cop out answer, but I don’t know how else to express it. To be able to function to my highest ability, to my full stability, you know, to be able to do the things that I want to do. Even if it means having to modify during a group exercise class or, you know, making sure I get enough sleep or what have you. Yeah, that I’m still, you know, I’m not succumbing to my illness and forfeiting everything that I enjoy about life, but rather finding ways, like to repeat what you said earlier, you know, to find ways to — you said it so much better. You have to find ways to move alongside it or to —
Cheryl:
Oh, yeah, yeah. To ride alongside it, live alongside it; allow it, rather than seeing it as the enemy.
Marisa:
Yes. Yeah, exactly. Not see it as the enemy, but just see it as just part of me that, you know, has to be taken into account.
Cheryl:
I mean, that’s the key, I would say. I mean, I would say I totally resonate with it. That’s like, what you’ve just described is almost like the thesis of occupational therapy, is helping people adapt and helping people, you know, function and live to, like you said, ‘function at my highest ability, even if I have to modify’. That is no small feat. So, yeah, I love it. I love it. Is there anything else you want to share with the audience before we wrap up?
Marisa:
I mean, honestly, I think I feel similarly about, you know, physicians, as I do about, like, group fitness practitioners. Like, I think any ‘good’, quote-unquote, practitioner in either those fields, you know, if you present a potential complication or concern about the class or about the treatment, like, it should become a conversation and there should be a modification available. Yeah. Like, I know that maybe that’s idealistic, but.
Cheryl:
No, I love that. I love that. I think that’s super helpful. Yeah, that’s something that a lot of people don’t think about. So, thank you, and where can people find you if they want to talk to you or ask questions?
Marisa:
So, I’m at @neurogal913 on Instagram. I also have a group fitness Instagram that admittedly has been — it’s not abandoned but it has definitely been neglected. It’s @mishmoshmovement.
Cheryl:
Oh, okay.
Marisa:
Yeah. M-I-S-H-M-O-S-H-movement. All one word. And yeah, I mean, I’m open to questions or if you’re in the Atlanta area, to let you know where I’ll be teaching.
Cheryl:
Awesome. Well, thank you so much for taking the time to share your story and your tips. I really think people are gonna benefit from your wisdom and ideas. So, thank you again.
Marisa:
Thank you.
Cheryl:
Okay, bye-bye for now.
Marisa:
Bye!
