Camille and Gittel share how they learned to manage rheumatoid arthritis and ankylosing spondylitis in a supportive virtual environment through Cheryl’s Rheum to THRIVE arthritis support group program.
They share how lost and overwhelmed they felt trying to manage it on their own, and how the educational support group has helped them not only on a practical level but also emotionally. They also share their best tips for managing flare-ups.
This conversation originally took place as an Instagram Live discussion in September 2021. Gittel can be found on Instagram
Episode at a glance:
- Camille’s journey getting diagnosed with rheumatoid arthritis
- Gittel’s journey with ankylosing spondylitis: diagnosed in 2018 after a lifetime of chronic pain
- How Gittel and Camille felt overwhelmed, confused and alone while trying to manage their conditions on their own. Gittel finds an online support group but it wasn’t a good fit for her.
- Gittel & Camille join Cheryl’s Rheum to THRIVE educational support group program
- Camille reflects on how the group has helped her process challenges around the pandemic and uncertainty
- Gittel shares her experience overcoming shame around using mobility aids and helps others confront internalized ableism
- Camille loses her health insurance and is forced to go to “Dr Google” for answers, which was terrifying
- Camille joins Rheum to THRIVE and transforms to feeling confident and supported
- Gittel shares how terrified she was about using “Dr. Google” to learn about ankylosing spondylitis and how the organization of Rheum to THRIVE helped her feel less overwhelmed
- Cheryl, Gittel and Camille share tips for flare ups: rest breaks, hot showers, breath work, alternative pain relief such as cannabis, mental work such as anchor breathing and mindfulness exercises
- Cheryl, Gittel & Camille share their Covid19 vaccine experiences
Medical disclaimer:
All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Episode Sponsors
Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in October 2022!
Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.
Speaker Bios:
Gittel Paola – she/her/ella (@gittel_GT on Instagram) is the daughter of Central American immigrants who was born and raised in Los Angeles, California. She’s dealt with chronic pain since she was 15, and was officially diagnosed with Ankylosing Spondylitis, Crohn’s Disease, depression, and anxiety at the age of 30. She is currently unemployed due to disability, but identifies as a “Forever Teacher” along with being a “Professional Patient.” When she can, she tries to write, read, watch tv/movies, and generally nerd out. Cheryl would like to add that Gittel is also the “Queen of Gifs!”
Camille can be found on Instagram at: https://www.instagram.com/camilledemere/
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:
- Cheryl’s Arthritis Life Pages:
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page –
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl:
So, I would love it — can you just give the audience a little basic info about you?
Camille:
Yeah. Um —
Cheryl:
And your rheumatic disease journey?
Camille:
Sure. Sure, sure. So, I’m Camille. My pronouns are she/her, and I live in Portland right now. I have rheumatoid arthritis. And I hope my story is a little out of the ordinary in that I’ve been working on a diagnosis that about 2017. But I would say that I’m solidly, like, late 2020 was when I was solidly in my diagnosis and felt like I had a care team and all that stuff.
Cheryl:
How about Gittel? Yeah, just a little basic info like what your diagnosis is, and a little bit about how you came, I guess, actually, also how you came to the group, the Rheum to THRIVE group.
Gittel:
Okay. So, my name is Gittel, sometimes I go by GT. I have a few different diagnoses. But the one that I joined for this group in particular was for ankylosing spondylitis. I was diagnosed in 2018. But I’ve had chronic pain in my life since 2003. So, I’ve lived with it for a really long time. And dealt with it by myself for a really long time. And I had gotten to that point where I was like, I literally, I’m doing everything I can think of, I don’t know what else to do. And it was my therapist who said, “Maybe you should join a support group. Like find, people who are like you who are going through the same kind of thing.” And I was like, okay, and I did look for support groups, and yours was the second one I found. And I liked it.
Cheryl:
Oh, good. oh, I’m so glad. Yay. And then I mean, not — this is always a bittersweet thing, right? Because I’m like, I’m so sorry, you have to be here. But given that you have this diagnosis, I’m glad you’re here. Yeah. And Camille, I’m curious, because you didn’t get your full diagnosis till the end of 2020. And then I started Rheum to THRIVE in its current form in March 2021. So, I’m curious. Yeah. Like, what made you interested in it?
Camille:
So, I think I actually, like came upon you, Cheryl, in like a synchronous moment when you were like actually getting ready to ramp up. I think that that period was like, two weeks long, honestly. So, I was like, same thing, like getting ready to really face the thing head on, make it not my full-time job, but something that I really needed to focus on. And I felt so overwhelmed and confused. And I felt like I had been doing all the right things and not feeling any better. And I think a lot of us who go see rheumatologist and any sort of like long-term care doctor, know that those, after that initial appointment, where, you know, the big hour-long one, they really — they’ve got to get you out. They have tons of people to see. And so, I didn’t even know what questions I had until I got home. I was feeling really lost; I was feeling really confused. And when I came upon you, like, and I know now that that there’s like a little bit of a learning curve when you come upon someone who’s managing their disease so well and has been for a little bit of time is like, why can’t I do that? Like, I want to do that.
But the thing about you is you were offering kind of like a little guide, like, hey, I’ve spent all this time learning these things, both as a patient but also with your occupational therapist background. Like, I was like, oh, this person — if anyone knows what I’m supposed to be doing right now, it’s this person. I thought, yeah, let’s give it a try. Like, worst case scenario, I just know who else is out there. And what actually happened is, I’ve ended up like, I’m managing my disease so much better. I feel way less lost, just because whenever my brain is like, “Oh, my God, I can’t handle this. Like, this is so much,” I remember that I have a huge chunk of people who are going through similar and same things, and we’re all on different progress routes. So, there’s people who are newly diagnosed and that’s kind of an interesting thing to meet them where they are and then there’s folks like you in the group who have been working with their disease for years. Just being able to kind of exist within those people has been really cool.
Cheryl:
I’m so glad. That’s exactly why I why I made it. And I think you hit the nail on the head, in terms of you get this first appointment with the rheumatologist when you get your diagnosis. Like, maybe an hour long, maybe 45 minutes. And then that’s kind of it in terms of like, in-depth appointment for the standard of care usually. Then you just get these 20-minute follow ups every three months. And, you know, first, the lucky few, they get put on medications that work right away. And it’s like a straightforward path. That was actually kind of me in 2003 initially, but then things almost inevitably get complicated, right? There’s, you know, this medicine stops working, or you get more symptoms or, like with Gittel, when you have co-morbidities, multiple health conditions, then you kind of start playing Whack-a-Mole where you’re like, “Wait, my stomach’s off. Is it this; is it that,” so, having that ongoing support to me seems just like a complete no brainer, you know. But for some reason, unfortunately, like occupational therapists and counsellors and physical therapists, we just are underrepresented in rheumatology for many different reasons. But, you know, I wanted to make this program that was something that I could do like right now. Like, I want to change the system long term so that everyone can just get this kind of support through the health system and like not have to find me online randomly, you know. But yeah, Gittel I saw you nodding during some Camille’s story. Did you want to add to that?
Gittel:
Yeah. And you just, when you said like, I was like, how did I find Cheryl, actually? And it’s, yeah, through Instagram. So, it was like my first foray or attempt at finding like-minded people. What’s the phrase I’m looking for? Finding people going through something similar, that can understand? So, I’ve been following a lot of people on Instagram. So first, I started following a lot of therapists on Instagram. And that is very, um, has been extremely beneficial for me, actually. From there, I was like, well, if I’m following therapist, maybe I should follow occupational or physical therapist. And that’s actually how I ended up finding you, was by that search and finding who to follow on Instagram. And I also found during that transition time, so I don’t know if you remember, but like I emailed you way back when, and then I got like the Rheumatoid Arthritis Life Course Map thing that you had? And I, honestly —
Cheryl:
Yes. Yes.
Gittel:
— A blank, a blank google doc set up for myself that I was going to take notes on for this like life course map. It’s blank, Cheryl. It’s blank. It’s blank. Why? Because I found out that I am a support group person. Like, I need what we do, like the fact that we have our little mini lessons at the beginning. And then, I learned things and I take notes. And then we have our like, group discussion portion. So, the fact that it’s both things, and not just like us crying all the time, even though that is definitely needed, you know. But like, the fact that that’s not the full has been really beneficial for me, too.
Cheryl:
Yeah, no, and I’ll just explain for those two, who are also confused on what I’m actually offering. I have this course, the Rheumatoid Arthritis Roadmap that’s like a self-paced. So, if you don’t want the support part, and you just want access to like, like what Camille was talking about earlier, like, I want to get in Cheryl’s brain and learn what she’s learned, that’s what the Rheumatoid Arthritis Roadmap is. In the past, I also offered that with an optional eight-week short-term support group. But then I decided to do a longer six month one.
Gittel:
Yes! And then, in that time, I found a different support group to join. And honestly, this was not a good fit for me. Like, if you can believe it, I actually did not talk during the support groups. Me. I. Me. Did not talk.
Camille:
I can’t believe that.
Cheryl:
I don’t believe that.
Gittel:
That’s how you know — that’s how you know it was not a good fit for me. I didn’t feel comfortable talking. Yeah, that just shows you what it was. And then luckily, it was no longer an eight-week course. And it was a six-month course that you had made. And like I said, game changer. Like, that’s what I needed.
Cheryl:
Oh, I’m so glad. And I think other things I mentioned, like I made the roadmap, the Rheumatoid Arthritis Roadmap self-paced course, to kind of say like, this is all the knowledge that I’ve learned as an occupational therapist and as an RA patient, but I do want to make sure something I’m really trying to be so clear about and like, like Camilla saying, oh, I want to know — like, it seems like Cheryl has the answers. And I know you guys both know this, but I’m very clear. Like, I don’t have all the answers and no one really does. Like, you know, there’s like — what is it called? — the Dunning-Kruger curve where like, the more you learn about something at first you like, yeah, you think that you’re really confident and then the more you learn, you actually get less confident in what you know, because you realize how complex everything is. So, I just want to be for the record because it actually is a big pet peeve of mine when I see other programs be like, “This is all the answers,” like, you know what I mean? And I know that the one thing that I can practically guarantee is that, you know, if you come to the group open minded, you will feel a different relationship to your disease by the end of six months. And hopefully that’s more at peace and accepting and maybe positive. And if you don’t, I’ll definitely be like, you know, money back guarantee. Because, I mean, that’s not what you’re looking for. But, you know, one of the things I think is so freeing is when you realize there are some things out of your control, and you don’t have to keep searching for this perfect plan, this perfect health solution that will make you never, ever, ever have any pain again. Like, no one can actually guarantee that so we learned — we have to learn to like accept the inevitability of pain while also being life, but we can still thrive with that. It’s very complicated, but it somehow works.
Camille:
That’s what life is. It’s, you know, there’s no such thing as knowing every answer perfectly. But what we can do is build up a bunch of experts around us who can help us in those moments where there’s a big confusion.
Cheryl:
Heather, who’s in the group is also on this chat, you can — if you want to join now, Heather, I know you’re available later too, because we’re gonna do another one of these. But if you want to come now, you’re also welcome to because we can do up to four. But yeah, you say, “No one has all the answers. But I have so many more answers since joining your group.” And that’s true. So, if I think of it as like, when you’re in that overwhelm stage after getting diagnosed, you have so many questions and you don’t know what you don’t know, I definitely think that with my knowledge and experience, I can help you funnel that down to say like, “Okay, this is why this area is confusing,” or refer you to people like Jenifer, the Chronic Pain Nutritionist who’s one of, in my mind, one of the most helpful people out there to educate on these confusions around diet. I really think of it as like having a tour guide. You know when you go to a new city, you can sit there and try to read the book yourself, you know, but you can also just have like a human being next to you being like, you know, “This is that, this is how this building came to be,” or, you know, and also kind of — and then you can have as much individual support in that as you want. Or you could say after a little while, “Okay, I got, you know, I’m gonna take this and run with it. I don’t want this guy with me anymore,” you know, so but Camille, I’m sorry, I totally interrupted your train of thought.
Camille:
I think I was just saying, or it reminded me like the idea of building up experts around you who you can trust and who you can come to with your individual problem, but who also — I think a lot of the topics that we talked about wouldn’t necessarily be something that I would come to someone if they were like, “You have 30 minutes with an expert, what are you going to ask them?” Those aren’t the things necessarily that I would ask, but at the end of the lessons and the support time, I’m like, oh, yeah, I’m more capable at this thing. And I think all of us who are living with chronic illnesses and taking medication that puts us in the immunocompromised section, this year and last year have been unknowable. Like, they’re, the data has been changing, the recommendations have been changing, the behavior of people not experiencing the same diseases as us has been unpredictable to the extreme. And to just have other people who are there… Like, we literally, a couple of weeks ago, help somebody work through a problem that each of us has had in the pandemic. Is this safe enough? Like, am I going to feel comfortable? And you don’t have to make those decisions by yourself. Like, you’re more informed after being a part of Rheum to THRIVE, but you also have a bunch of other brains that can kind of work through those big problems with you in like an educational way, and like a supportive way.
Cheryl:
Yeah. Yeah, one of the things that surprised me the most was hearing, or just seeing how powerful it is for someone to say whatever it is, they’re feeling, you know. If they’re frustrated, they’re angry, they’re happy, you know, whatever it is that week, and just — and then having someone else in the group, not necessarily me even, but like another person that they haven’t even had a relationship with yet initially, say, “Oh, me, too,” you know? You can almost, you can like see, even though it’s all over Zoom, and you just see the relief in people’s eyes like, “Oh, it’s not just me.” I remember when you were talking about — you are helping one of the member’s work through their shame around using a mobility aid, and this kind of complex — there’s this complex psychological thing that happens when you start needing or potentially needing, you’re in that grey area. Like, am I really bad enough to need a motorized scooter or a cane? But do you mind sharing a little bit about like your — how you’ve come to terms with that and stuff?
Gittel:
For me, it was a lot. I feel like what most of us go through where it’s like you don’t know it until — you don’t get it until you get it, you know, like until you’re there? So, I was bedridden, and I could not move the few feet from my bed to the bathroom. Like, that was the biggest, like, challenge for me. And I used to have someone help me get out of bed and make it few feet. And finally, I don’t forget whose idea it was, but they were like, “Let’s get you a walker.” And obviously, me being me, I decorated and named to the walker. So, that’s My Little Pony that I have. And so, My Little Pony just lived right next to my bed. And it was one of those things where it was, it was mind blowing, I was like, oh, my gosh, I just got a piece of my independence back. Like, I don’t need to call someone and ask them to walk me to the bathroom, because I now have my walker, My Little Pony, that helps me get to the bathroom, you know. And I was like, and now I can actually do a few feet of like, what, and I just remember feeling so relieved, first of all, and just realizing like, wow, this thing really brought back a level of freedom for me that I had been missing, that I had been going without for a few months at that point.
And so, I remember when one of our members in our group was going through that and said like, “My doctor just said my progress, like, I might need this, like, blah, blah,” and she was feeling really down about it. And I think it was something along the lines. I was like, you know what? When you need it, though, it’s gonna feel good. I don’t know how to put it. But I was like, it’s not, you know, like, it’s the same thing like what we were talking about at the beginning where you’re like, you don’t want to be like, like, I hate that you’re here. But at the same time, I’m glad that we’re here together. Like, I’m glad that we have each other to misery through this, you know. So, it was almost like offering another perspective, a different point of view. And I feel like that’s what we get a lot in our groups, you know, like, sometimes it’s like, “I’m struggling with this thing,” and it’s like, “Oh, I already did that. I already went through that. Let me tell you how my experience was.”
And one thing that I really enjoy and I love about our group, and it reminds me, actually, Cheryl, of what you were saying where you were like, “I don’t have all the answers,” that I’m like, well, you have answers, though, for you, you know, that you have the answers that have worked for you, and you’re able to share with us your experience of what it was that you did. And just like that tour guide analogy that you were giving us, like, “Oh, I might want to check out that pub or that restaurant later that you’re mentioning right now, because it seem to have worked well for you. Maybe it’ll work well for me too.” But it goes back to that mantra that I always say and that I really love of, everybody’s different. Like, every body is different, you know. So, like, what works for one person might not work for me and vice versa. But it’s just good having — knowledge is power. It’s just good knowing what those options are. Like, before this group, I didn’t even realize the difference between biologics, DMARDs, and like, all the different kinds of medications and stuff. And yet, those were the things that they were pumping into me. There was like, I don’t, I don’t even know the things that you’re putting in, you know, and now I have so much — I just feel so much more empowered with the knowledge that I have, you know. Because, like I said, knowledge is power. So.
Cheryl:
Yeah, no, and the seeds for this group began when I went to occupational therapy school to get my Master’s six years after my diagnosis. And during my Master’s program, I learned so many things. I was going to work with, at the time, what I called, you know, ‘special needs’ or, you know, children with developmental disabilities. And I didn’t even think I was going to work with arthritis at all. And but I was like, oh, I’ll probably learn some interesting things, you know. And I learned so much. And I was like, why was I never taught any of this? Like, I didn’t even know —
Camille:
And you were already a patient.
Cheryl:
Yeah, I had already been a patient for six years. And I hadn’t — I didn’t know about — I didn’t know fatigue was actually related to my disease. I thought fatigue was just me getting older or maybe a side effect my medications. And so, like you said, I mean, I get — I feel like I’m Chicken Little sometimes. Like, “Who’s gonna educate the patients?” you know, but, you know, and some people — the thing is, I’m trying to think of the devil’s advocate all the time. Like, it is possible, right. On your own, it’s possible to look up, there’s a lot of — there’s books, there’s articles, but you get to a certain point where it’s just overwhelming, right, to try to sort through it all on your own. So, did you — can either be remember what it was like, trying to sort through it on your own before the group? Yeah, Camille?
Camille:
I mean, good. So, I described my journey as I hope that it’s not a traditional journey. One of the things that happened for me was, I was working at a New York startup when I started feeling ill. And I actually got laid off in a downsizing and lost my health insurance as we were getting the understanding of the disease. And so, I actually ended up only because of the American healthcare system, working off of a maintenance dose of Sulfasalazine for like a really long time that I should have been bumped up if I had been taken care of. But so, what ended up happening is I was one of the millions of people in America without health insurance and with a chronic disease, trying to do it by myself. And I didn’t even have access to doctors at that time. So, I was really on my own. And that feeling is awful. You’re, I mean, we’re all staring down a diagnosis that is not going away anytime soon, right? Like, this is something that part of getting educated on it is coming to the understanding that this is going to be with me forever, in one way or another. And that’s really, really hard to do when what you have is like Dr. Google, right. Like, because all you see is the worst stuff. We all know that when we’re searching online, you only see like, if you look for pictures of rheumatoid arthritis, you only see people who went without medication for decades, like it is — they’re trying to be educational to doctors on what it could look like, but what it ends up doing to patients is terrifying us.
So, that was really like, my experience without a support group was that I felt completely overwhelmed with my diagnosis and with what the next 20 years might look like. And before I met you, but in 2020, or 2021 — God, March. Or in 2021, I did get state health care. And so, I had my first meeting with a rheumatologist before I met you and before I joined the group, but I hadn’t had my second one. And so, I really didn’t know. I hadn’t ever had two consecutive rheumatology appointments before and so, I was lost on what I was supposed to do on the second one, how I was supposed to be interacting with my rheumatologist, how to ask for care in between. And those were all things that we went over in the first couple of weeks. So, I did kind of experience a rocket ship of going, I am self-managing in the most extreme way possible, to I have some health care but I’m confused, to oh, if I’m worried about going on, methotrexate, I know 15 people who have used methotrexate at some point in their life, might be using it right now, and I can ask them what it felt like, and what their comfort level was, and does this fatigue ever go away. For me, thankfully, it did even now, and I don’t experience it anymore. But those first couple weeks, it was real nice to tell someone, “Hey, does this ever chill out? Because I’m taking four-hour naps every day,” and people are like, “Yeah, it does. It does chill out.”
Cheryl:
Oh, my gosh, yeah. You’re — I almost forgot. I did forget, I’ll be honest, that you hadn’t even had a rheumatologist appointment until March of this year. Like, that — because you really are such a confident self-manager. Not just self-manager, but like a — it’s funny because the word ‘self-management’ in the field of like occupational therapy means like the patient’s ability to manage the day-to-day demands. So, you actually are self-managing really, really well now. But before I know how to share how you’re using it, like you were literally alone managing.
Camille:
I was, yeah, I was abandoned on a raft in the sea. Like, I wasn’t — yeah. Right now, what I’m doing is like in-between appointments, I feel confident in my ability to use assistive devices and braces and compression, all the things we talked about. But back then, I was like, I guess I just keep taking this medicine.
Cheryl:
Yeah, I’m so, so glad to hear that. Yeah. And we do, like, in the program, just to paint a little bit of a picture of what’s covered. Like, I’m kind of obsessed with acronyms. So, THRIVE is an acronym. And like, you know, the first month we talk about the ‘Tools’ for pain and fatigue. The second one is to talk about ‘Habits’ like diet, nutrition, exercise, sleep, and then we talked about ‘Relationships’ and social life, which is such a forgotten area, but you know, it’s such a huge area that affects our quality of life, like how to talk to people about your condition, and friends and family. And then we talked about ‘Inner world’ which is a stress management and mental health. And then that V is the ‘Valued activities’, like hobbies and how to still participate in things that bring us joy, and then the E, the last one, is ‘Executive functions’, which is like putting it all together to be the CEO of your care team. I keep referring to it as a support group for that, and that is a huge part of it that’s throughout. All the meetings, we have a support group session. But the first part where we talk about the little mini lecture is really specifically on a topic that teaches you how to cope with these things.
Camille:
And it’s super educational, I’m taking notes on time. And for me, and that’s part of the beauty of it, was the organization of it. Because, like I saw a comment on here that talked about being diagnosed in the 80s. And I was like, oh, my gosh, yeah, pre-Internet, you know? Diagnosis pre-Internet? Had to write? And the thing is, Camilla, you and I have had this discussion before, about knowledge is power versus ignorance is bliss.
Camille:
Yeah. Knowledge is power and ignorance is bliss.
Gittel:
Yeah, yes. And for me, I could not, could not bring myself to do Dr. Google, because it terrified me. And I would end up in an anxiety spiral. And I was just like, I can’t, I can’t. And I was just so paralyzed by my own — and people would criticize me and be like, how are you able to do so much research and everything about like, your social justice warrior ways, or like, you know, teaching or whatever else, that Harry Potter, whatever else that I’m interested in, they’re like, “You spend hours on the Internet. You’re researching, blah, blah, blah. Why don’t you do that for your own condition?” I’m like, ’cause I’m scared. Like, have you seen what’s out there? Like, it’s terrifying. Like, I don’t even know where to begin. So, having the acronym, and I love acronyms too, which is part of the reason why I was like, I know that I’m in the right group, like, this is the group for me. So, part of why I love that so much was because of the organization of it. Like, I no longer felt overwhelmed with me and Dr. Google and just trying to figure it out, you know. It was like, no, no, no, right now, we are literally just going to talk about the T. We are just gonna talk about the tools for pain and fatigue.
And one other thing, I think that, Camille, you probably had this, too, was realizing like, “Oh, I do that. Oh, I do that too. Oh, okay.” And it kind of makes you — it’s validating and it makes you feel good. Like, oh, okay. So, all the stuff that I did by myself isn’t a waste or anything, and I’m able to bring that knowledge that I have for myself to other people, you know, and then we get to share. It’s just, it’s brilliant. Like what you were talking about, Camille, with the whole methotrexate thing. It’s like, it’s true. I went from having zero friends who have that and have taken that pill that nobody knows anything, to like, no, I have 15, you know. Now I have people I can ask. And we also have our private group, you know, so it’s like one of those things where it’s like, if I don’t make it to group or if I have a question afterwards, I can still ask it and be like, “Hey, what about this?” And I love the check-ins that you do, Cheryl. Where you do the Monday gratitude one, and the Thursday checking in on the goals. I love that because it also just the pressure of like, I’m gonna make a post all by myself, and it’s just gonna live there. It’s like, no, I’m actually being asked and being invited to write something.
Cheryl:
I’m so glad. Yeah, oh, my gosh, all this is like, I’m literally gonna cry. You were talking about the normalizing, like when you’re in the group and you say something like, “I’m scared of taking methotraxate,” and just having like, those 15 people in the group, you know, seeing them on the Zoom call being like, “Yeah, I was too,” or, sometimes having the contrary opinion, like, “You know what, I wasn’t. And this is why,” you know.
Camille:
Yeah. Yeah, yeah. Yeah. We, like, we are definitely not a hive mind. And also, I think in your education portions, you’re really great at explaining these might be different paths you choose to take, or you might choose not to be on this path right this moment, but it’s here for you if you change your mind. Like, we do have not huge arguments or anything like that. But like, amongst the group, people are managing their diseases slightly differently. And that’s also really cool to see too, because we’re all able to communicate about it. I mean, like, Gittel and I technically have different diseases, right, but we’re going through — like, it’s not just for rheumatoid arthritis. In the same way that anyone with rheumatoid arthritis knows that people are like, “Oh, arthritis, my grandma has that.” Okay, you recognize the word, you know, but that’s not the same thing. I think sometimes people might see the Rheum to THRIVE and worry, “Oh, I don’t have rheumatoid arthritis. Is this group still for me?” And it’s like, yeah, if you are going through rheumatic disease of any kind, ankylosing spondylitis, rheumatoid arthritis, non-diagnosed yet, like there’s still something in this group that is helpful for you.
Cheryl:
Thank you. Thank you for clarifying that. Yeah, I specifically made like the Rheumatoid Arthritis Roadmap course, it also like honestly mostly applies, I’d say, 80% to 85% applies to all the different conditions and rheumatic diseases. But Rheum to THRIVE is specifically designed to apply to all rheumatic diseases. I try really, really hard to strike that balance of like, you know, I am very open in my story, my personal journey that like, I don’t feel any shame about taking Western medicine. And I really think that there’s a lot of damage that can come from like the ‘Natural is always better’ camp, but I also recognize that for some people, that is the best for them specifically. Like, there they are the one person, and that’s the best for them. I just, I try to advocate against anyone saying one thing is the best for everyone, whether it’s Western medicine is always the best. I mean, as a licensed health provider, like I am aware of the evidence that like there is more evidence at this time for certain medications than there is for certain natural methods. That doesn’t mean though, that, you know, lack of evidence doesn’t mean evidence that it’s bad or not helpful. So, I try to always, like, I help try to make sense of all these. Again, there’s so many rabbit holes, so many areas of confusion. Yeah, we were talking about, we had a whole session on making difficult medical decisions. And it wasn’t like, “This is the decision to make,” it was just how to confront the cost benefit analysis in your life and your condition based on your patterns, and all the different factors. Like, I’ve had it for 19 years. So, at this point, I have a lot of data points to go off. If you’ve had it for less than like a year, like Camille, it’s like, you don’t have as many data points. So, you’re gonna that’s gonna be a little bit more guesswork.
Gittel:
For me, that was part of my journey, was I was so stubborn about it. I was like, I don’t want — I want to be natural. Like, I don’t want to use any of that. I don’t want to put chemicals in that. And part of that is because of my trauma of dealing with chronic pain for so long. I did a lot of damage with ibuprofen, you know. So, like, ’cause no one explained it to me like, and I didn’t — Dr. Google wasn’t a thing yet when we were, when I started with all my pain, you know, like it was — oh, my God, my age and my suffering. [Laughs] It was still dial-up Internet at that point, you know? It was like what it is now.
Cheryl:
Yes, I remember. Yeah.
Gittel:
It was the beginning. Yeah. Like, you know, those graphics on the websites and stuff. Like, it’s not, it’s not what it is now. Um, so yeah, there wasn’t even the option to really Google at that point. Like, I don’t even think I had the name for chronic pain yet. I don’t even think I had that. It was just like, I have random hip pain all the time. What do I do? And I was taking like that, the maximum dosage of ibuprofen daily, and it wasn’t doing anything for me anymore. Yeah. And that’s actually how I got into cannabis. Because I was like, well, that ibuprofen isn’t doing it for me anymore. And medical marijuana, something in California had just passed it for medical marijuana to be legalized. And I was like, oh, and I happened to be in Amsterdam at the time. So, I was like, you know what, let me try it out here. It’s legal here. Let me see how it works. It was the first time I got to sleep well through the night. And I was like, okay, as soon as I get home, I’m getting myself a card. Like, that’s it. So, I was using cannabis for a really long time to self-medicate, basically. And for a while it worked. And that probably led to my stubbornness also of like, I don’t want to try other things. I know that this works for me. But it stopped working for me, which is tends to happen with almost any medication. I feel like eventually your body kind of just builds a tolerance. And it’s like, okay, what’s the next thing though.
Cheryl:
That’s why that patient education is so necessary, right? To understand that like, ibuprofen and painkillers, they’re not actually targeting the disease process itself, you know. So yeah, you might — it’s kind of like a Band-Aid versus like, you know, getting the underlying cause under control, you know, so.
Gittel:
I understood none of this. Yeah, it wasn’t until I joined this group that I started to understand. And I was like, oh, okay. And exactly, Cheryl, what you just said, like, that was one of the things that it helped me understand, you know, and like, also about like, just like, I think I mentioned earlier, like the difference between biologics and DMARDs, and just all these medications that are always talked about and everything. And that, like, I just had no idea and I was too afraid to Google because of aforementioned things.
Cheryl:
Oh, totally. I really am similar to you in that. And I always tell people like, you know, when I first start medications, it’s like weird. On one hand, I’m all about like, patient education, patient education, but I’ll be honest, I actually don’t — I will ask my doctor, “Is there any major side effect that’s likely to happen that I should watch out for?” Otherwise, I don’t even want to read all the giant list because it’s just gonna make me think about —
Gittel:
Oh, right. The ones like, where 3% of people are gonna get it.
Camille:
Yeah. What are the ones where I need to like, call you about? Let me know about those.
Cheryl:
Oh, Aliyah had a question: Tips on how to handle flares. That’s definitely something that we talk about in the group under tools for pain and fatigue. So um, because I’m not sure, if you mean a flare up of — a lot of times people mean pain, but you can also have like a flare up of fatigue as well. So, I’ll let you two speak first, though, what are some of your biggest tools?
Camille:
Oh, yeah. Um, so for me, I think the first thing I will say, and I remember reading this one of the very, like, when I was stuck in bed, I don’t know what I’m doing. I live in New York. So, I’m walking all the time. So, I’m accidentally keeping myself in a flare sort of time. I remember Googling what to do. And one of the things was, like, you may just need a rest day where you get — and it was a British thing. So, they said, it’s so funny. But it was like with a comforter and a chocolate. And I was like, well, capitalism says no. Capitalism says I can’t do that. So, I’m going to say the same thing. And it’s gonna, like, feel icky, but like, your body is going through something really intense. And so, you do have to give it the grace and like, you have to kind of have the grace to be like, this sucks. And I have no choice over it. I need to take some time. And if you live a life with children, or with a full-time job or something, that might mean, I’m planning to go to bed early, or I’m planning to sleep as late as possible. So, that’s one thing, especially with those fatigue flares, where you just wake up and you feel like, did I accidentally go to a rave in the middle of the night and I didn’t know? You know what I mean? I wish someone would have woke me up for the rave, my body definitely went through. But, for me, personally, what I’ve found to work really well is keeping consistent on my medication. But then if I wake up and I’m still in a flare of like, large joints of pain, muscle fatigue, getting in a shower as soon as I possibly can, like, even before coffee is really wonderful. The heat and the steam can release some of your pain. You have to be a little bit careful. And I’ve learned this from you, Cheryl, is that sometimes what feels the best, which is often heat is not the exact best thing because sometimes you need to reduce the inflammation with ice. But I like to loosen up my joints as much as I can with a shower. And then I’ll come downstairs and grab an ice pack and ice whatever is particularly loudly demanding my attention.
And then, if you don’t have — if you do have arthritis, rheumatoid arthritis, or something with swelling, and you don’t yet have compression gloves, compression sleeves, they work to reduce the inflammation. But a thing that I learned in Rheum to THRIVE through the tools education is also that the compression kind of overwhelms your pain receptors a little bit. Like, just your nerves can’t deal with all of it. So, you get a little break, because all of us are experiencing pain signals from our body saying, “Hey, something’s wrong,” and we already know, right? Like, we need to reduce that inflammation. But we don’t actually need all those pain informations that our body is giving us. So, compressing things is really nice. And taking as much space as you can, in time as you can, to really care for your body those days, it’s gonna make the flare last fewer days, which will then get you to that point where you can think about doing other things to reduce your possible pain. So, like, give your whole body the day off until you don’t feel that flare sensation. And then in those interim times, which hopefully will get longer and longer, you can do exercises and protective measures that will help you and build up your toolkit for the next time that you’re flaring. And I hope that feels like it’s helpful, Aliyah. I’m sorry. I really hate the sensation of waking up with a flare. Like, more than anything, it’s also mentally discouraging. It’s just like, I have things to do.
Cheryl:
Yeah, I have a life!
Camille:
I have plans.
Cheryl:
Yes. Gittel, what would you add? Those were great, great tools. Would you add anything?
Gittel:
Yeah, they were great. Yeah. With what Camille said, she reminded me of one of my favorite phrases, which is so true. It’s ‘Pain demands to be felt’. Like, it just does. Pain demands to be felt. And so, one of the most important things that I’ve learned is exactly that. Like, okay, you gotta lean into it. Like, and accept like, this is probably for me, but also for other people. Like, I realized that like, the more I resist something, the more that I’m like, no, like, the more that I’m like, “I refuse, I’m gonna try, I’m gonna —” the worst that’s gonna be for me. So, I just need to lean into it at that moment and realize that it’s not going to be forever that I’m leaning into it, you know. And I’ve also noticed that like, when I do, it doesn’t seem as magnified or amplified, you know, because I really do feel like pain is your body trying to tell you to slow down or to stop. And if you’re ignoring it, and you’re like, “No, I’m still gonna —” it’s just gonna get louder on you, you know? Until you don’t have a choice but to listen, which is what happened to me. And so, for people who are like, where I was where it’s like, no, you really — like, Camille, when I listened to you say, “I get in the shower,” I’m like, when I was bedridden, like getting in the shower —
Camille:
Oh, yeah. Sorry.
Gittel:
Oh, my God, like, yeah, that’s not gonna happen, you know. So, cannabis has been extremely helpful to me. Cannabis, like, I still use it. Like, it’s not like, “Oh, it didn’t work, so I’m just gonna stop,” obviously, but it’s part of my toolkit. So, I’d have it in a lot of different forms. So, I have tinctures, I have pills, I obviously still have flower in my bong, her name is Mimita. I have topicals that I put on, you know, like, I have so many — I have the whole drawer, which is my toolkit of like all the pain stuff. But I think that one of the most helpful things that’s not a physical item has been getting into meditation or some way of just being able to — I know it sounds weird — but like, to be able to compartmentalize or to escape my physical pain by going into my mental and emotional, you know. And so, the practice of meditation and building up that stamina has been instrumental; has been really, really helpful for me at times when I can’t focus on anything else.
Cheryl:
And you touch on a lot of the things that we talked about, you know, in the program. I mean, when you have a flare up, it is a signal that your underlying methods of controlling your disease are maybe not working as well, right, because the idea was ‘treat to target’ now, which is like the standard in rheumatology, is that you’re trying to usually target very minimal to low to no disease activity. So, long term, you might need to talk to your medical team and figure out how can you get the disease under control.
Camille:
The other thing is, if you are under the care of a rheumatologist and you are experiencing flare out of normal, is like, hit him up. Like, most people have portals now. Sending a message to your care team, even just to the nurse station and saying, “Hey, just letting y’all know what is going.”
Cheryl:
My first major flare up was six years after my diagnosis, and I didn’t know that my biologic, my body could create antibodies to my biologic. So, I was sitting there doing my pain relief things like, you know, things I had learned about just through Googling, like, you know, ice and stuff. But it was like, I really need to tell the doctor and eventually, I obviously did because she was like, well, this is a signal that like, that this is not working for you anymore, we need to switch your medication plan. And so, that’s really important. Then the other thing is that, on the one hand, like meditation and mindfulness, like Gitell said, that it can help you like transcend your physical body. But on the other hand, there’s this huge paradox that we go, that we talked about a little bit in like, Acceptance and Commitment Therapy, and that I’ve had to go through therapy to figure out. So, if this doesn’t make sense, please don’t worry. But is that actually taking a moment to be present with your pain, rather than trying to relieve it is actually weirdly empowering. Because it’s like, you were, you spend so much time energy running away from it. And that’s, it’s almost like communicating to your brain, “I can’t handle this. I can’t handle this pain, I have to relieve it.”
Pain science is extremely complex, because like Gitell said, sometimes pain is a signal that you need to slow down. But other times it’s a misfiring signal that it’s actually, when it’s chronic pain, that is in the absence of active tissue damage, an accidental signal that there’s pain when there’s actually not. So, actually, sometimes, that’s why it’s, again, it’s overwhelming, right? I feel overwhelmed just talking about it. And so, knowing that you will have to do some trial and error. Sometimes, surprise — there’s all these paradoxes in rheumatology and autoimmune. Like, for example, if you actually exercise a little bit outside of your own baseline — so, if your baseline is barely getting out of bed, exercise is getting to the bathroom and back. If your baseline is walking a mile, challenging yourself a little bit would be like walking a mile and a half, then you’re actually — fatigue typically gets better, and you sleep better. And you would think, wait, why would my fatigue get better, you know? There are all these paradoxes. So, feeling your pain could actually make the pain less scary to you because you’re saying, “I’m here, I’m not running from you, therefore, you’re not as scary.” So, just throwing that out there.
Gittel:
Breathwork has really been helpful for that one, more than meditation. And especially anchor breathing, which is just a quick one that I’m going to put out for anyone that might find this helpful. But it was one of those things I would do it a lot when I was getting acupuncture, and cupping, and stuff like that. But it was, you breathe in what you want, and you breathe out what you don’t want. So, I would breathe in relief, or I would breathe in peace, or I would breathe in whatever it is that I was hoping for or just like, and then I would breathe out what I was hoping to let go of, like control, or the thing that I’m feeling, or the thing that I knew was plaguing me and keeping me clenched up instead of relaxing into what I needed to be relaxing, which pain is obviously something that keeps you clenched up. And it’s hard to relax into pain.
Cheryl:
Yeah, so hard. I remember when I hurt — my neck got hurt in a car accident. And it was so frustrated because I was trying to do this deep breathing and just the muscles in my neck, even just moving slightly with breathing. I’m like, I can’t even breathe without pain. Argh!
Gittel:
I had to learn how to breathe into my diaphragm. But yeah.
Cheryl:
Oh, the same if you’ve ever had costochondritis. I do want to make sure we answer the question about vaccines. Can we share about our vaccine experiences? So, just real quickly, yeah, I got the vaccine as quick as I could, you know, and, you know, I think it’s important to say that there is a small chance that you might have some sort of flare up after the vaccine or whatnot. Anytime anything happens to your immune system, whether it’s you get the common cold or an ear infection or anything, your autoimmune disease can flare up a little bit. But to me, it’s again, all about making a risk benefit analysis. The risk of getting COVID is so monumentally bigger than whatever risk of the vaccine that it was just completely no brainer. So, I got Pfizer right when I could and then I got the booster the minute I could, and, you know, yeah, I felt a little bit worse, a little bit of fatigue for like a, you know, week after and then it’s fine now. But what about you guys?
Camille:
Same thing. I was — my whole heart and all of my loves, basically all live in New York. So, one, COVID affected me more than maybe somebody who is only from Portland, because I was watching it all happen. So, and, you know, like the majority of us who are experiencing an underlying condition, this is extremely terrifying, an extremely terrifying time to be in. Not precedented. No one told us that this was going to be part of our storyline. I want my money back. But for me, I was also like you, Cheryl, like paying attention, I was signed up to all of the things. So, I got my vaccine very early bike Portland standards. And then I got my second shot. My first one didn’t feel any type of strong reaction. And I didn’t change my medication at all for that one. And, like recovered in a few days, or even less than that. And then the second shot was pretty similar, slightly more tired. And then like you, Cheryl, as soon as the booster was available, I was there with all the like, I literally was sitting with a retirement village full of — a retirement village bus full of older folks and it was boop-boop-boop-boop-boop, hello! They gave me a little trouble, I will say, but I think it’s gotten better for people now. I did need to like have them call my doctor, confirm that I was on methotrexate. I did feel a little bit of judgement from even people like later, just hearing people talk about their shots has been a little bit of a learning experience just because people like to talk about how in the US it’s not necessary or it doesn’t feel necessary that we should be sending them to other countries which I agree with. But also, I’m here and I’m real frightened about the effects having — I have people in my life who have long COVID, I have people in my life did not survive their battle with COVID, I have people who have COVID right now after getting their two vaccines. So, it is still very real. I still protect myself quite a lot. I am staying indoors the majority of my time and masking when I go out and avoiding public things and trying to protect my exposure when it comes to other avenues of how COVID could get to me as best as I can. But overall, the vaccine experience was, like, very reasonable for me. I have been a person who gets the flu shot every year, which I recommend that even people who haven’t been doing that, you know, we all know what happens now with an endemic disease, a disease that never goes away and we need booster shots. Like, that’s what the flu is. So, get your flu shot.
Cheryl:
I just got mine, yup.
Camille:
Yay, good job. What about you, Gittel?
Gittel:
Um, for me, it’s been basically the same. I feel like all three of us were on it with vaccines. I remember scrambling to try and get a vaccine, you know, because that was at the time when they had this, they had approved it only for the elderly, and they hadn’t approved it for immunocompromised or immunosuppressed people. And I was like, what about me? Like, I don’t want to die. I remember just being so terrified, because at that point, that’s, like talking about what Cheryl’s talking about — oh, sorry. Yeah, you have to go. But talking about, what Cheryl was talking about with balancing out the pros versus the cons. Yeah, I was like, I don’t, I don’t want to die. And I feel like that’s a pretty good reason like to get all these other things. So, I got the vaccine. The first one, I feel like yeah, I just had like arm pain and I think I just had to sleep, had to sleep a lot more than I needed to. The second one was worse than the first one. I think that most people had that kind of experience with the second one. I think I had a bit of a headache, I think like it might have even been like a slight fever. But once again, like by the next morning, I was already like on a different, it was already better. And then the third dose, weirdly, did not affect me as much as the first two did.
Camille:
Oh, really?
Gittel:
I don’t I don’t know exactly what that means. But, yes.
Cheryl:
I have to take Charlie to school. So, I’m sorry.
Camille:
Hi, Charlie!
Gittel:
Hi, Charlie. He doesn’t have to be on, I just —
Cheryl:
No, we could just talk all day. I really, really appreciate you sharing your perspectives, you know, on Rheum to THRIVE but also answering everyone’s questions this morning.
Camille:
This is a really special group. It really changed the course of my summer. Honestly, the fact that I just had like a weekly appointment with my cute, like, spoonie friends was vital for me this summer.
Cheryl:
Immuno-buddies. I like that word.
Camille:
Immuno-buddies. I love that.
Cheryl:
Or rheum-mates.
Camille:
Cute. Oh, my God. Branding.
Cheryl:
Well, thank you all. I know, I know, right. Like, rheum to THRIVE, rheum-mates? Oh, my gosh.
Gittel:
Oh, aren’t we also life-thrivers? I think that’s what Susan calls us, life-thrivers.
Cheryl:
Oh, yeah. Life-thrives. Yes, arthritis life-thrivers. I can’t remember. Yeah. So much. Have a good day!
Camille:
Thank you, bye!
Gittel:
Bye!
