Summary:
On Episode 67 of the Arthritis Life Podcast, Meaghan Quirin (also known as “Arthritis Meggie” on social media) shares her journey going from confused to being a confident advocate for herself and others with inflammatory forms of arthritis, particularly psoriatic arthritis.
Meggie shares her journey growing up with juvenile idiopathic arthritis, which turned into psoriatic arthritis (PSA) in her twenties. She busts common myths about PSA and delves into the importance of advocacy, mental health, sharing our stories and more.
Episode at a glance:
- Meaghan’s Diagnosis story / saga for JIA and then PsA: medical gaslighting, delays in care , learning to advocate for herself and more
- What does Meggie Wish People Knew about PSA? Dispelling common misconceptions
- Meggie’s advocacy journey: from insurance step therapy to formal advocacy
- Relationships: Meggie reflects on dating with arthritis and shares how her husband supports her
- Meggie reflects on the importance of mental health & how being open about her diagnosis helped her
- What’s it been like to share your story online? Meggie shares her story writing for Bezzy PSA from Healthline and sharing her story on social media
- Meggie’s advice for newly diagnosed patients
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
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.
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. The next group starts in April 2022, join the waitlist now!
Speaker Bios:
Meaghan Quirin: I am 29 years old and live in New York. I was diagnosed with Juvenile Idiopathic Arthritis at age 2, and Psoriatic Arthritis at age 26. I started my Instagram account @Arthritis_Meggie in 2020 to help me process my re-diagnosis, and it has become a wonderful source of information, community and support. I share my story to help others find a diagnosis and to find community through shared experiences. I am passionate about raising awareness for psoriatic arthritis!
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Speaker links
- Instagram: @Arthritis_Meggie
- Twitter: @ArthritisMeggie
- Facebook: https://m.facebook.com/ArthritisMeggie/
- 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:
[Introductory music]
Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.
Cheryl:
I’m so excited today to have Arthritis Meggie, also known as Meaghan, also known as Meg, here for the Arthritis Life Podcast. Welcome!
Meaghan:
Hello! So glad to be here.
Cheryl:
Yeah, so glad to have you. And now that I’ve known you on Instagram, it’s great to actually be able to talk live.
Meaghan:
I know. I feel like I already know you.
Cheryl:
Oh, totally, totally. Like longtime friends. So, can you just let the audience know a little bit about, you know, where you live and what your relationship to arthritis is?
Meaghan:
Yeah. So, I am born and raised in Long Island, New York from Manhasset, a little town, and I still live on Long Island, just a little further bit out east now in West Hampton. I spent some time living in New York City, which was a fun experience. And I was diagnosed with juvenile idiopathic arthritis at age two in 1995, way back when. And over the years, my arthritis changed a little bit. There were some hiccups in my treatment. And I ended up being diagnosed with psoriatic arthritis in 2019. And most recently, I’ve started getting into the advocacy world and writing for Bezzy PsA.
Cheryl:
Yeah, I love that. Bezzy is from Healthline, right. And they have a, it’s like an app that they have for — there’s one, Bezzy RA, which I do some writing for sometimes. And yeah, that’s amazing. We can talk more about that later. But I do, actually, you know, we always take some time to talk about people’s diagnosis story/diagnosis saga. So, I know when you were two, I’m guessing it was a little more straight forward. But I remember reading on your page about what happened when you started feeling some joint symptoms and other things again, and you, what was that when you finally got that diagnosis of PsA? I know that there’s some barriers.
Meaghan:
Yeah, it was crazy, actually. And it’s really what has inspired me to talk so much about my diagnosis process, because even with the history of JIA literally on all of my records, I still was gaslit. Like, beyond my doctors, being told, “That’s tendinitis. You should work out less. Try physical therapy. It’s isolated. It’s just your knee. Oh, it’s just your elbow.” It took eight years between when my symptoms started reoccurring when I was 19, until I got my PsA diagnosis. And it was a lot of, unfortunately, older male doctors who were looking solely at my blood work and nothing else. Yeah, quite unfortunate.
Cheryl:
Well, and yeah, that that’s always surprising to me, because, well, not the old white male part, because that’s pretty well documented. But especially if you have a history of JIA. Like, you know, I was always taught, and I don’t diagnose as an occupational therapist, you know, but I was taught that the diagnosis for an inflammatory arthritis or autoimmune arthritis like PsA or psoriatic arthritis or rheumatoid or, you know, the spondyloarthropathies like ankylosing spondylitis, there’s like four pillars, right? You have blood work, and you have the patient’s physical presentation. So, you have to feel your joints and feel like some redness, warmth, swelling, tenderness, and then your subjective report. Like, that’s another pillar. That’s not just some random icing on the cake. That’s like, important.
Meaghan:
Very.
Cheryl:
Yeah. And then there’s your personal and family medical history. So, you had like three of the four pointing to PsA. And can you tell the audience, because I know a lot of people, you know, they might be in the very — some people listening might not even be in the pre-diagnosis stage where they feel like you were for those eight years. Like, something’s wrong, but I don’t know what it is. And no one — people are telling me it’s not inflammatory arthritis, but maybe it’s in the really early stages. Like, what were your symptoms of PsA?
Meaghan:
Sure. So, for me, it was the other tricky part was I was a freshman in college. So, so much of my life had just changed at that time. So, the fatigue that I was experiencing, some of the brain fog, you know, having like emotional reactions, that all was kind of getting mixed up in just being in a new place. My dorm room was on the fourth floor; there was no elevator. So, when my knees started hurting, I was like, “Oh, I bet I’m overdoing it.” And when I went to the doctor and was told, “You’re overdoing it,” I said, “Okay, you must be right.” But now, you know, years gone by and I think back to those appointments, I knew I should have known better. They should have not gaslight me, but also at the same time, I had a lifetime of rheumatology experience.
I have been seeing a rheumatologist since I was two years old. I know the musculoskeletal, you know, they go through and they have you move this joint this way and this joint that way, and I have like the muscle memory, literally. I go to the doctor and my body just starts doing those things that they do to you. And I would go to those appointments in those early, you know, in my early 20s. And there was it was just such a strange shift for me between peds and, you know, and adult rheumatology. It was almost like there was such a disconnect. I had been given such amazing medical care from two to 18 under my peds rheum, who always took me seriously always listened to my concerns. And then I stepped foot into an adult rheumatology office and I was like looked at like, “Why are you here?”
Cheryl:
Wait, so did your symptoms — I know that, for people who don’t know, juvenile idiopathic arthritis is much more likely than the adult’s inflammatory arthritis is to go into remission. It doesn’t go into remission for everyone. But if you have juvenile idiopathic arthritis, some kids, you know, quote-unquote ‘grow out of it’. So, were you —
Meaghan:
Right. That’s what I was told. They were telling me, “You grew out of arthritis. This isn’t arthritis. Stop working out so hard, do some physical therapy.”
Cheryl:
Wow, that’s so… That’s really sad, because we know, like health providers know what the risks are of uncontrolled inflammatory arthritis. And so, yeah. Anyway, I’m preaching to the choir.
Meaghan:
And so, by the time I got to — yeah, so it took, I mean, when I saw a rheumatologist right when I was 19, he told me, “Okay, go to PT.” I listened. I saw another one a couple years later, just checking in again, something still didn’t feel right. Again, was told, “Probably just tendinitis. You’re very healthy, you’re in good physical shape, yada, yada.” I appeared healthy, which is part of the issue a lot of us deal with. It wasn’t until I was 24. I had such an intense full body flare. I was having like high fevers. I couldn’t walk. All of my joints were so swollen on the left side of my body. I couldn’t like feed myself. So, that’s when I was diagnosed with inflammatory arthritis. Finally, somebody was like, “Yeah, something’s up here.”
Cheryl:
And it’s not just an injury. I mean, like, this is —
Meaghan:
Right. This is systemic. Yeah. It took until it was absolutely catastrophic to be taken seriously, which is unfortunate. But at that point, they put me on just methotrexate and I had a rheumatologist who was like fresh out of med school, and she was lovely. She really listened. But she didn’t have the best experience, I don’t think. She did not tell me how vital it was to take the folic acid along with the methotrexate, and my side effects were awful. I gave up within I think 10 weeks. I said, I can’t take this. I don’t have like a real diagnosis. This medicine makes me feel sick. So, I went the holistic route thinking, because I, at that point, I started to internalize all of this. I was like, what am I doing wrong? Why am I feeling so sick? I was just so overwhelmed. So, I enrolled in like a holistic health program and I learned about inflammatory diet, and autoimmune paleo, and I did a few of those things. I changed my diet and it worked. Worked — ‘helped’, better word, for a few months, and then I had to get another massive flare up, and went to another rheumatologist. This time I took the time to research a female experienced rheumatologist. That’s what I wanted to say.
I wanted to see somebody that had been doing this for a little while and that was a woman that might listen to me. And I showed up to that appointment with pictures of my swollen joints, journals of all of my symptoms. I was like ready to fight. And she took one look at me and she looked at my medical history. She looked at my family history, first person to look at my family history. She goes, “Your maternal grandmother had psoriatic arthritis and psoriasis and nobody has ever mentioned this to you as a possibility?” She’s like, “You have psoriatic arthritis, you have enthesitis. That’s the pain that you’re having in your elbow. That’s what’s going on here.” And she was so — she seemed so disappointed in her field for me.
She was like, “Please don’t show me your photos. You have nothing to prove to me. We’re gonna get this sorted.” And she got me on Humera, within, I think, I started Humera the next day. She was like, let’s get on this because at this point, you’ve had eight years of your body, your disease is getting smarter learning how to, you know, work around medications. It’s gonna be a struggle to get this under control. You have to like, prepare yourself. This is going to be tough, because it had ravaged my body for like almost a decade. And I’m still — this was 2019. I’m still kind of working my way out of that like, you know, never ending flare. So, that’s why I’m so, so passionate about talking about psoriatic arthritis, because I think that it’s a lot to do with a lack of awareness just overall. Before I saw that doctor, I myself had no idea that you could have psoriatic arthritis without active psoriasis. Didn’t think it was possible. But as long as you have that family history, it’s absolutely a possibility.
Cheryl:
Yeah, no, that’s really, really important. I just want to stay on this topic of your diagnosis experience because I’m curious, emotionally, what you felt like. I mean, obviously, it sounds like you really liked that female rheumatologist who gave you a diagnosis. That’s how I felt too, but something that it took me — it wasn’t until my first flare up that I then started really — I don’t this to be all about my story, but long story short, like once I had another flare up and kind of really understood this for me, I didn’t understand really the disease that much.
Meaghan:
The gravity of it.
Cheryl:
Yeah, the gravity of it. I got diagnosed, I got put on Enbrel. I felt amazing. I was like, done, just gonna take Enbrel for the next 60 years. I’m good, you know. And then when I had a flare up and realize that goes up and down, and, you know, you have to change your medications over time. And then I started really processing what had happened before my diagnosis, and I felt it’s taken me a long time. I still, I harbor some feelings of, you know, I’m angry at the people who didn’t listen to me, you know, I’m angry at the fact that I had a delay in diagnosis. And, you know, first of all, at first it was hard to give myself permission to feel anger. I was like, no, you should feel grateful because you at least got it —
Meaghan:
There’s access to medicine now.
Cheryl:
Yeah. So, like, in your mind when you realized, or when she told you that, essentially, it was like a slam dunk case of PsA, I’m guessing that you were relieved, but also probably like, “What?!”
Meaghan:
Yes. So, in the office, it was literally like, sigh of relief, and then flood of tears. Only because I have family members with PsA, so I know what it looks like, you know. At that moment, it almost was like, it was like, “Okay, I’m so happy to have this confirmation that I’m not making this up. But also, oh, crap. This isn’t in my head. This is real. This is for real, for real.” But like you said, I immediately, I started on medication. So, Humera worked so well so quickly, for about five months. And then it was like, hard crash. Because I was taking it by itself. And what I’ve what my doctor and I have learned now is that I do better keeping methotrexate in the mix, just so that my body can’t form those antibodies. And she said it’s very common in people who had delay in diagnosis, because our diseases tend to get smarter while they’re untreated, because they can just kind of like roam about and, and yeah, grow and thrive.
Cheryl:
Totally. Thank you for thriving, cells that are attacking my synovial lining. And yeah, no, I always say I was on Enbrel, and I was also on methotrexate. So, I’ve been on methotrexate for 19 years. And yeah, and I had — so funny, so many similarities. I had this same experience with folic acid. Like, because folic acid isn’t a prescription, I thought it was kind of a nice to have, not need to have. And then one week, I was like, oh, I was like a week behind in refilling it. I’m like, no big deal. I’ll just get it next week or something. And then I was like, why do I feel horrible, you know? And I talk to my doctor, she’s like, “No, you actually — that’s not just like a hey, take fish oil. Like, that’s like, you have to take folic acid, you have to take it.” So, anyway.
Meaghan:
That shouldn’t be like, it should literally come together in like one pack so that we understand how important they are to go together. Yeah, if I had known that the first time around, I might have lasted a little bit longer on it. But yeah, there was definitely a grieving process after the Humera failed, because that’s when I realized like, this is a lifelong management situation. I don’t get to just — because, you know, I think, unfortunately for us Americans too. We have these drug commercials that really fool us. You know, they make it look like okay, you take your medicine and then you’re going to be running through the fields with not a care in the world. And unfortunately, that is not the reality. Especially wasn’t for me. It took six months on Cosentyx after Humera failed for it to kick in. And I was on really high doses of prednisone while I was waiting for that to kick in because my doctor is trying to prevent further joint damage. Like, I can’t, I don’t have full extension of this arm anymore. Because of like, I can’t touch my shoulder.
Cheryl:
Oh, wow.
Meaghan:
That’s from lack of treatment. That’s not going to go away.
Cheryl:
Yeah. That’s the repercussions.
Meaghan:
Of not treating. And that’s another reason why I get very passionate about, you know, people being so black and white about holistic. And not, you got to do a little bit of both, in my opinion, because I tried both black and white ways and doing just one or just the other is not enough.
Cheryl:
No, for most people, it’s not, you know. It’s estimated about 5% of people can sustain — or 3% to 5% can sustain long term remission for rheumatoid arthritis. And it’s without Western medications. And, you know, I think that’s, it’s often posed as like these two equally valid options. And when you say, okay, I might take either like this natural method versus this, you know, oh, scary pharmaceutical, but you’re not — the evidence is so much stronger for the medications, not just in like each individual medication being shown to overall like, again, on the population level, like individual results vary. Obviously, they have people who are on Humera for 11 years, and feel great. Like in your case, it only lasted five month s, but —sorry, I forgot where my brain was originally going with that. I think I was basically saying, like, you’re not, it’s not like this one has a 50/50 chance, and this one has a 50/50 chance. It’s like, your odds are not in your favor to go full in on the holistic route. And that is a risk, even though it sounds like not a risk because the medications have all these, you know, disclaimers they have to put on to protect patients, you know. So, anyway, but yeah.
Meaghan:
For me, I guess I came to a point where I was like, okay, yes, those side effects are scary, especially Humera. I think there’s like a blackbox warning or something ridiculous. Like, it can be intense the idea of going on these medications. But I couldn’t walk. My knee was so inflamed that I couldn’t move, you know. You have to, it comes down to like a pros and cons list, I guess for some people. But in my case, I was literally looked dead in the eyes by my doctor and said, “If you don’t start this drug now, this is just gonna get worse and worse.”
Cheryl:
Yeah, yeah. And that’s where it becomes a lot more clear. But I think you and I have both — and by the way, for those listening, you should definitely check out Meggie’s @arthritis_meggie Instagram, because you do a lot of great, you know, reels and videos, and we’ve both done ones about, like, you know, medication shaming and not feeling you know, helping people not feel guilty for taking medications. That doesn’t mean you’ve failed, you know, it means that you’re taking steps to protect your health, just like lifestyle factors are really important, obviously, as an occupational therapist.
Meaghan:
Yeah. I think they should be like looked at the same way. I wish it would — I wish the culture would shift that way. Because whenever I was first talking with friends and family about all of this and starting these medications after doing the holistic route, especially, the shock and the ‘Are-you-sures’ and you know, it’s, for me, at this point in time taking methotrexate and a biologic is just as healthy as hopping on a bike ride or having a gluten free meal or whatever you might think is the best thing for inflammation. It’s so individual. And I really like the Chronic Pain Nutritionist, Jennifer, she has such a great approach about that. I always recommend her for new people ask me about arthritis and nutrition. I think she has the right approach because all of our bodies are so different. You really need to make it an individual journey about what to cut in, cut out, what medicines work, what don’t, what supplements work, and what don’t. All of that.
Cheryl:
Yeah, absolutely. Absolutely. And so, I want to make sure I give you some time to talk about, you mentioned earlier, you’re really passionate about helping clear up misconceptions about PsA or psoriatic arthritis specifically. So yeah, that was when I didn’t know until, I don’t know, a few years ago that you could have psoriatic arthritis without active psoriasis or a history of psoriasis.
Meaghan:
It’s a very small percentage of people — not very small. I think it’s like 30% or under about PsA patients that have psoriatic arthritis symptoms before psoriasis pops up. And for me, I always had very dry skin. I probably had mild psoriasis growing up but not enough for it to be alarming enough to treat it. Definitely on like, you know, my elbows and on my scalp. When I was in college, I was having chronic itchy ears and I never knew why. And then I figured out after I got my PsA diagnosis, I went to the dermatologist, and she was like, “You have psoriasis in your ear canals.” Not a lot but like inside, I get flakes. So, it hides. I thought that was really — I think that that’s just like so interesting. I am very passionate, yes, about people knowing that you don’t have to have lots of plaques, lots of psoriasis covering your body for it to be PsA. It seems to be that that family history is key if you don’t have the active psoriasis, but it can follow afterwards. I didn’t have like really bad psoriasis on my scalp until after Humera failed. When Humera failed, it’s almost like my immune system kicked it up a notch and they were like, “Okay, We’re coming for you.”
Cheryl:
Now we’re going to tell you for sure, in case there was ever any doubt. It’s not rheumatoid. It’s psoriatic.
Meaghan:
But I think mostly I just wish more people knew what psoriatic arthritis was in general. I mean, a lot of times I get a blank stare. Societally, I think most people are aware of osteo, right. That’s why we get those ‘You’re too young’ comments. And then secondly, I think people are more aware of RA. They know the deformities, they usually have had a, you know, a family member or somebody in their lives that have experienced it to a degree. But mostly, I think everybody needs to know that every single arthritis patient experiences this disease differently. Whether OA, RA, PsA, JIA, no two people are the same. So, I think that’s where I wish the whole, everybody, would just don’t compare.
You know, like, I know that it’s a very natural human instinct to try to draw connection in a conversation when somebody says, “Oh, I have arthritis,” you want to say, “Oh, so and so I know did this and that.” And, you know, and it comes from a good place most of the time, I think, but I just I wish people would listen more, and educate more. So that’s, you know, I just wish there was more awareness of psoriatic arthritis. And more than that, the fact that there are hundreds of types of arthritis, it’s not just a little two or three here and there. And then I think the biggest misconception which we’ve definitely talked about a little bit is that you don’t have to have the skin involvement. You can develop the joint pain first. So, being aware of that can definitely help. And then, you know, if you suspect that you might have, if you’re in those early stages, and you think, “Is this psoriatic arthritis?” do some research and there might be a psoriatic arthritis center or a rheumatologist that sub-specializes in psoriatic arthritis. Because in my experience, I’ve learned that even some rheumatologists don’t know enough about PsA. In my little hometown practice, unfortunately, that rheumatologist was mostly used to dealing with older patients with osteo, so that’s their wheelhouse, right? Sometimes you have to travel a little bit or do some research to find the right fit, that’s going to be the right rheumatologist for you, like sub-specialized.
Cheryl:
Yeah, no, that’s, that’s super, super helpful. And when you’re talking about the name of it, you know, people hear the word ‘arthritis’, whether it’s rheumatoid arthritis, whether it’s psoriatic and they just think osteo often. And because of that, and also when they hear psoriasis, psoriatic, they might just think, “Oh, well, like maybe you have one joint that hurts in your skin; you have issues with their skin,” but do you ever use a different name? Like, I know people with rheumatoid sometimes say I have rheumatoid disease? Yeah. So, do you use it?
Meaghan:
I do say that sometimes. I’ll say ‘psoriatic disease’ sometimes, or sometimes I’ll just say I have like an inflammatory joint condition. Because that seems to like break it down for people a little bit better. I definitely agree. I think when people hear psoriatic first, they are like, looking at my skin and they’re like, what does that have to do with your joints? But really, it’s like even — and even calling it psoriatic arthritis, I feel like doesn’t do enough justice, and same with — you know, it’s a disease. It’s a full body systemic disease for us. Like, this is I have a running list in my phone of other specialists I have to see as a result. Endocrinologist, cardiologist, dermatologist.
Cheryl:
Pulmonologist for some.
Meaghan:
Yeah, yeah. It doesn’t just stop at the joints and the rheumatology office. It’s so beyond that for so many of us. And I think that’s why it’s such a sting and a sore spot when we get compared to osteo. No hate there. It’s just that it’s a very different type of disease. I don’t think that there’s this — I could be I could be wrong. I don’t have a, you know, I don’t have experience with this myself, but I don’t think that like the flu-like fatigue and some of those systemic things that we deal with as RA or JIA or inflammatory arthritis patients deal with, I don’t think OA touches that in the same way.
Cheryl:
Yeah, it is interesting.
Meaghan:
It almost diminishes, yeah.
Cheryl:
You know, so there is some, just FYI for those who might have osteo who are listening, there is some evidence emerging that, you know, it is semi-inflammatory, like more inflammatory. Osteo is more inflammatory than people realize. But it’s definitely not a systemic disease in the same way that the — like, people put psoriatic arthritis, rheumatoid, ankylosing spondylitis in this umbrella of inflammatory arthritis, which confusingly, people sometimes just get an inflammatory arthritis diagnosis that’s actually from kind of like more like a reactive arthritis. It’s like short-term from post-viral or something like that. But the point is that any inflammation doesn’t like to stay in one place, whether the inflammation’s from, you know, from these kinds of diseases are something totally different. And so, it can travel and cause a little bit of that.
Like, if it’s from osteo, it can cause a little bit of the fatigue and stuff if it travels up to the brain, but it’s just not the same degree. And, you know, I once actually talked to, to be honest, I talked to a fellow occupational therapist, someone very experienced. And I said something like, you know, “So many people don’t realize that how systemic, you know, rheumatoid arthritis is,” and she’s like, “Well, so-and-so,” I’m not gonna say who this was, to say who this person is, but they’re like, “Well, you know, my friend so-and-so has knee arthritis. And yeah, they’re saying how tired they are after they play tennis, because they have knee osteoarthritis.” And I’m like, yes, if you have knee arthritis, osteoarthritis, you have to move your body differently, right. So, you might have a little bit, it might be more tiring for you to do those activities. But that is not the same as your entire immune system being completely out of whack, and it happening to attack your joints in addition to other healthy tissue. It is, you know, it’s hard, ‘cause on the one hand, I’m always like advocating for occupational therapy and physical therapy, and like, so many patients never get referred. And it’s so important to have all those.
Meaghan:
We always have to ask. Why isn’t it being offered?
Cheryl:
Yes, why do you have to ask? But at the same time, I also have heard other people who have experiences with physical therapists or occupational therapists who don’t even like understand their disease. Unfortunately, we don’t, in my masters, we didn’t spend a lot of time on that. We spent like a million years on like stroke rehab, which is obviously really important, or like multiple sclerosis, even, which is really similar. Evidence about Multiple Sclerosis is similar to rheumatoid arthritis when it comes to fatigue and cognitive symptoms. But, you know, it’s like, “Oh, yeah, just lump rheumatoid and psoriatic in with, you know, one little paragraph.” Anyway, sorry.
Meaghan:
Actually, I was just gonna say, when I’ve been dealing with these insurance issues, I’ve been dealing with the lumping. A lot of lumping together.
Cheryl:
Yeah. Wait, so what does that mean for people who don’t know?
Meaghan:
So, okay, so anybody who is listening, who doesn’t follow my page already, a little recap. Since January, I have been struggling to get a new biologic. It is now April 25th, okay. So, it’s been craziness. I’ve been stuck in step therapy limbo. And if you don’t know what step therapy is, it’s basically your insurance can say, “Here, the lower cost drug we would like you to try,” you know, sometimes we’ll have multiple steps. So, my insurance has three steps. They want me to try three different like types of drugs before they’ll allow me to access the more expensive one my doctor is actually prescribing, which drives me bonkers. So, they wanted me to try — I had failed Humera, right. And I’d been on Cosentyx for about two years and it’s losing its efficacy. So, trying to come off of it. But they don’t care that I have failed Cosentyx. It was not one that they will provide anyways. So, even though — and Cosentyx has an IL-17, or IL-23 inhibitor, one of those two. They now are like, you need to try Taltz, which is a cousin of Cosentyx. And I was already having some GI related issues to the Cosentyx which can happen because like we were saying, inflammation doesn’t like to stay in one place. And so, they’ve studied and found that those types of IL-17, IL-23 inhibitors can contribute to stomach upset and inflammation.
So, my doctor was really pushing for me to be able to try Cimzia for a couple of reasons. You know, it’s a different type of inhibitor. It’s great for people in childbearing years. I might want to get pregnant in the next year or so. So, like having that already in my system would be excellent. But I was denied on appeal. They said, no, you have to try our steps. So, I tried Taltz about a week and a half ago, almost two weeks ago. And I had a horrible reaction. I was so sick for like 10 days, I still have a reaction site from it. Definitely a fail. Hard fail. My doctor was like, we’re just throwing this one right out. So, now I’m back to square one. And it’s been almost five months of trying to get a biologic. And the scary part for me is that I know how detrimental this is to my health at this point in time. I know how much this is harming my body.
And I think the biggest issue with the insurance companies is that they lumped us all together; they put us all in a box. They say if you have inflammatory arthritis, here are the drugs you can choose from. And it’s like, well, hold on. We know from research that certain types of arthritis respond better to certain types of inhibitors. Shouldn’t this be a consideration? Shouldn’t we break this down a little further? And even beyond that, everybody is so different. Why should some on-staff physician for the insurance company be the one who gets to look over my file and decide, “No, that’s not for you”?
Cheryl:
And it’s not even always a physician. That’s what’s scary. So, like, first of all, thank you for sharing that. And I’m so sorry you’re going through that. Because basically, what it is, is you’re suffering for no reason other than insurance companies to make more money. And I really pride myself in seeing the grey areas and being able to kind of understand another point of view. And I’ve looked into this issue really deeply. Like, I’ve gone to advocacy events with the Arthritis Foundation and the American College of Rheumatology. And it comes down to profit for insurance companies. And the most generous explanation for this is that insurance companies are trying to do their part to rein in exorbitant health care costs in the United States.
Meaghan:
And the ironic part to me that you turn around and the drug companies are like, “Oh, sorry they won’t cover it. Here’s a copay card.”
Cheryl:
Oh, yeah.
Meaghan:
Can you lower your prices?
Cheryl:
No. Yeah, well, yeah. Yeah. I mean, I give the pharmaceutical companies a lot, a little bit of a pass on that, because they’re at least helping patients.
Meaghan:
Oh, yeah, totally. That part just cracks me up a little bit.
Cheryl:
Like, when you go to med school — no, it does crack me up too. Like, it’s first do no harm. Withholding a therapy — sorry, it happens with therapy, too. So, I’m like, oh, my therapy. With occupational therapy happens with psychological counselling therapy, it happens on every level of the healthcare system. You know, we’ve got — when I worked in paediatrics, there’s kids with autism being denied, because you haven’t shown enough improvement. Well, I’m sorry, this child with complex issues isn’t showing on your little your little chart. But anyway, but so, they’re saying, oh, well, we need to like — what they’re trying to do is the insurance companies are trying to say, we don’t want anyone on these really good expensive medications like Humera, like Cimzia, we don’t want them on the medications if they don’t need to be because that’s contributing to this, you know, cost issue of like, health care in the United States. And so, you’re like, right, but if a doctor who’s treated your case, who’s looked at your medical history, that’s their — you know, they’ve gone to school for over 10 years to specialize in this. And then you get some random person who’s never seen you, never had — it’s not ethical, and it’s extremely insulting, you know, to me as a health provider to say that. It goes against the entire spirit of health care, right, and person-centered care, and patient-centered care.
Meaghan:
I feel like, insurance, they’re so big about, you know, getting ahead of things. All they’re doing is making me more sick. Now I have to go to a GI doctor, because they forced me on to a medicine that my rheumatologist said, “This is going to hurt her.” It’s not preventative at all.
Cheryl:
No. And I asked that when I was in Washington, DC with the American College of Rheumatology, and I was like, help me understand this. I really don’t understand, like, what is in it for the insurance companies? Obviously, it’s a profit, but I’m saying like, okay, with rheumatoid arthritis, let’s compare someone diagnosed in like 2022 was somebody diagnosed in 1980 when there was no effective treatments. Those people diagnosed before the medications were guaranteed to have severe joint deformities to the point where they need joint replacement surgery. That’s expensive. So, the insurance company’s long-term, don’t they realize they’re shooting themselves in the foot anyway, because they’re making the patients more sick? And you know what they told me, these people who are experts who live in Washington, DC, and lobby and advocate, they said, “They don’t care, because they only care about their quarterly profits. And also, the fact that —” and it’s all very complex, “Insurance is tied to employment. And people no longer stay at the same employer for 30 or 40 years like they used to.” So, they’re like, yeah, so Cheryl’s working at, you know, so and so’s school district getting insurance through there. And then two years later, when I’m bearing the repercussion of the insurance company A’s decisions, I’m then working for different companies at different insurance, and they’re bearing the brunt. So, anyway, sorry.
Meaghan:
Not their problem long-term. That makes — no, that totally makes sense. Thank you for bringing that up because I didn’t really think about it from that perspective. I was so caught up in that, how could this make sense for them, but that makes — that is it. And actually, part of my whole issue that I’ve been in this, you know, five-month journey is because I had switched insurance providers. It’s almost like you have to start over. The doctor had to, they didn’t — they at first weren’t even accepting that I had failed Humera because it was so long ago, I had to go back and get the records from my old rheumatologist because not only did I fail Humera, it gave me something called medication-induced lupus symptoms. I was like really sick from it. So, I had to go back, get those records, send that in just so they would take it because just my doctor’s note saying, “She took this 2019, didn’t work,” wasn’t enough. They were like, yeah, that was a while ago. Let’s have her try it again.
Cheryl:
And there’s like, oh, wow. I know, I every time I think I have heard it all, it’s — it’s so — it’s, yeah, it’s very frustrating.
Meaghan:
I feel like I’ve been bullied, to be honest. Like, I feel like people who have no say in my medical care, and they build these systems to make you feel small and powerless, because they’ll give you like an automated phone call being like, “Your medication has been denied. Have your doctor call and write,” one of the scripts, or they send you a letter in the mail. And it’s like, it’s like trying to intimidate you, is what it feels to me because I think the average patient is not — first of all, I don’t have a full-time job. Luckily, I work part time as a nanny and part-time doing freelance. So, I have time to spend hours on hold with insurance. But for most people, that’s not an option. So, they’re just gonna say, “Oh, well, I guess I’ll just do this, because this is what they’re offering me.” And I think that that’s really messed up. I don’t think that we should be pushed into medication choices that aren’t the correct choices simply for what? Pennies at the end of the day, because let’s be real, aren’t all biologics relatively the same price?
Cheryl:
I don’t — yeah, I think it’s that it’s such a insulting — I can’t think of a better word — and frustrating experience to feel like, I’m going to receive health care and the point of health care is to alleviate my symptoms as much as possible, and improve my quality of life. And it’s almost like, it’s like, you’re starving, and you’re sitting down to dinner. And then the chef is like, “Here’s all the stuff I think you need.” And like, let’s say, even more obvious of a connection, like you’re really sick, and you’re like, these are the foods are going to help you. And then insurance comes by and says, “You only get that one,” or, “You don’t get any of these. Go get something from the dollar store.” And you’re like what? Like, why — so this is why a for-profit health care system — I’m kind of like a weird, like, I, I’m still figuring out my thoughts on you know, capitalism, everything like that. But the one thing that’s become very apparent United States is that a for-profit health system is never, ever going to benefit the patients. And unless there’s some more severe, like, restrictions on it. And so, you know, that we are at the mercy of insurance in the United States, of the insurance company’s profit motive.
Meaghan:
Yeah, I feel like our insurance company was specifically designed for a healthy person. They want somebody who’s gonna pay like $400, $500 a month, just in case, and then like, go to their, you know, regular annual visits, and then somebody like me comes along, and they’re like, oh, wait, you actually need medical care? We don’t want to do anything about that. Sorry.
Cheryl:
Yeah, totally. And I actually, I want to make — I wanted to ask, because I think people are gonna — a lot of people who are young who get diagnosed with, you know, a form of autoimmune arthritis are, like, worried about how it’s gonna affect their future. Like, am I going to — how about dating? Am I going to be able to, you know, get married or have a job? And so, can you share a little? Like, how did you meet your husband? How has he been? Or how has it been navigating your health issues with relationships?
Meaghan:
So, we met in New York City on a dating app. And at that point, I was like, not flaring at the time that we met. He knew I had history of arthritis, and I had some joint issues because I was going to like non-stop PT still, at that point, just like always trying to get my elbow, my knee aligned. And he is excellent. Whenever he can, he comes with me to all my appointments. He was there when I got diagnosed. He’s been there for every knee draining, which, like, kudos to him, because those are gross.
Cheryl:
I’ve never had that. But I’ve heard stories from you and from Ali, @anotherdaywithra. Yeah.
Meaghan:
Luckily, knock on wood, since I’ve started biologics and methotrexate together, have not had a massive knee issue. But dating and arthritis, I could totally see how that would be an intimidating topic. Because, you know, you kind of — your significant other at times becomes like a built-in caretaker, and they have to be up for that. Not everybody is. So, I kind of got lucky, I guess, in a way. Like, my husband’s a sweetheart. And also, we formed a relationship before my arthritis got as severe as it did. So, he kind of like watched the whole thing snowball. But I think, you know, you just need open communication.
I try to tell him as often and, you know, whenever possible, like thank you for all your help. I really, really appreciate. I always let him know if I’m having a high pain day because whether we realize it or not, I think sometimes you can be a little snappier when you’re in pain. And like your, your significant other is your person, so that’s where you’re going to unintentionally probably take that out on. So, you know, just having open communication and talking about it. And I always, always encourage him if he ever feels like he needs to do counselling. Because I did counselling after getting diagnosed, because I think it’s crucial, honestly. Your life changes so much. And it was even more of a confusing one for me because I lived my whole life with what I thought was arthritis. And then as an adult, it became this whole new beast that I had never experienced. So yeah, I did counselling. I always encourage him if he ever feels like he gets to the point where he would like to talk to somebody, either both of us or on his own, I think that that’s — you have to be able to just talk about it. And it’s very freeing to talk about it. I spent up until you know, 27 years old, barely telling anybody about my arthritis. And then I made my page and it like, completely changed my outlook, my perspective, my ability to thrive with arthritis. I really think that having community makes such a difference.
Cheryl:
Wow. Okay, so that’s fascinating, because, yeah, when I see you now, I only know you as like a confident advocate. And you’re like the second person that I speak to tell me that, you know — actually, there’s somebody in my room to thrive group currently, that she’s in her older years. I’m not gonna say the age, but she said she’s, you know, and she’s lived over 50 years with arthritis, and just now is starting to tell people. So, I will say for anyone listening, it’s never too late.
Meaghan:
Yeah, it’s never too late. I always when I was younger, it was hard because I — yeah, I mean, I spent a lot of time in remission. So, I don’t think I really even understood the reality of it for so long. I was very little when I dealt with the painful part, to the point where I don’t really remember it. I do remember going to hospitals and, you know, getting lollipops after shots and things like that. But yeah, it’s definitely always a good idea to speak up, and speak your truth, and let it out. Because you might just help one other person. Every time — it doesn’t happen to me very often, I don’t have some grand following on Instagram, but I have a little bit of a community.
Cheryl:
I love your — yeah, sorry.
Meaghan:
And anytime I get a message from somebody that says like, “I’m so glad I found your page,” or you know, “Your content really helps me,” it is just everything. It’s everything. It feels like, okay, I can — the insurance company might make me feel small and helpless. But I can do this. I can put my voice out there and I can help people on like a ground level. Because, you know, going up to Washington, freaking awesome. I would love to get to that point in my advocacy journey, like that is definitely on the five-year plan. I want to get out there and start fighting harder. But if you’re feeling overwhelmed, just talking a little bit about it can make a big difference.
Cheryl:
Oh, my gosh. And so, I totally agree with that. And I want to make sure — I don’t know why, I’m like stuff on the timeline. So, you got diagnosed with psoriatic arthritis in 2019, and you started counselling after that. And then when did you start making your page and opening up about your condition publicly?
Meaghan:
I think I started my page in like the summer, end of summer of 2020. End of summer 2020. Yeah. And it was through counselling — and actually, I wrote a Bezzy article about my post-diagnosis journey, because I did the whole diagnosis journey. But then I think the after-diagnosis is almost more important for a lot of people. It’s like, how you’re going to go about the rest of your life with this. And for me, you know, the timing of the COVID lockdown came perfectly for me. I needed to rest so badly. And I, at the time, was working as a Montessori preschool teacher. I don’t know if you know about Montessori.
Cheryl:
Oh, okay! I do.
Meaghan:
But you have to sit on the floor with them.
Cheryl:
You’re down on the ground.
Meaghan:
Yeah. Up and down, up and down. Yeah, that wasn’t going so well. And that was when, that was in that Humera fail portion of time before Cosentyx. So, when the pandemic hit, I had time to sit with my thoughts and myself and reflect. And that’s when I really was like, okay, this is way bigger than I thought it was. And this is going to be about me, taking care of me. Like, nobody else is going to do this for me. I need to become my best advocate. Like, whether that means telling my doctor, “No, I don’t agree with that decision. Please write that in my notes that I asked for this,” you know, that’s one way to do it; whether it’s doing my own research, or being aware of new treatments, or just simply telling people about psoriatic arthritis.
Cheryl:
Yeah, absolutely. And I think, I really do think there’s quite a few of us who really leaned into our storytelling and connecting in 2020, which again, like you said —
Meaghan:
Yeah, having that time.
Cheryl:
Having the time and then also realizing that if we can’t connect in person, online is such a lifeline, right?
Meaghan:
Insane. It’s been life changing for me, honestly. I have formed so many wonderful friendships through Instagram. And it’s interesting because, you know, social media does get such a bad rep. And I get it, there are some horrible aspects to it. But for the chronically ill community, I think it is a lifeline for sure. I agree with that completely. It can be, you know, having somebody that’s just like checking in on you, or having somebody to vent to where you really truly don’t feel like you’re complaining because they get it, you know.
Cheryl:
Yes, yes.
Meaghan:
Little things.
Cheryl:
Yeah, I think that, like, there’s a lot of shame people carry, and even me. So, I just posted on my Instagram stories about camping this weekend. And I was so excited to go and like I so wanted to be like, what I wanted to happen is after going camping, I wanted to be able to have that success story and be like, “I used all my tools. And it was great.” And it wasn’t great. Except the sleeping wasn’t great; everything else was great about it. But I had this shame. Like, I must not have tried hard enough. And a part of it is justified because I forgot my amazing battery-heated socks. I think I’ve made videos about my battery-heated socks. I just forgotten my own tool. I forgot to bring my tool. Like, so —
Meaghan:
But that’s like moments where you’re just like, you have to take a step back and remember, like, I’m only human.
Cheryl:
Exactly.
Meaghan:
And exactly most humans who go on a camping trip don’t need to pack 15 other things. When I went on a two-week road trip a few weeks ago, I had an entire second suitcase of arthritis stuff.
Cheryl:
Oh, totally. Yes. And it’s like, and I’m like so — and I feel like when I share those moments of vulnerability and again be like, oh, my gosh, I shame myself so often. I’m like, you literally like created this job for yourself of being an arthritis educator and, you know, program creator, and support group leader, and influencer, and you can’t even remember your socks. And I was literally shaming myself. You’re freezing cold in the middle of the night, you can’t sleep…
Meaghan:
You’re not thinking logically.
Cheryl:
Totally. But then I was like, you know what? Like, I’m a human. I’m a human being. It’s okay, you know. And I’ve seen other people like Brené Brown, and like, who said, you know, she’s like the expert in shame, you know, in vulnerability. And she’s like, sometimes I mess — it’s seeing people who share not just like, my success story about arthritis, but also the little fails and little mistakes we make; it makes us all connect as actual human beings, you know.
Meaghan:
I think that those real moments are when you get like the most out of people too. It’s when you are — I posted a video, a reel, a few months back of like, you know, me crying and then smiling and the ups and downs. And it’s when people are like, “Yeah, same, honestly,” like, when you get — it’s very hard to be vulnerable and put yourself out there in ways like that. But it’s also very freeing.
Cheryl:
Totally. And I wanted to circle back because you mentioned that you’d be interested in going to Washington, DC. I don’t want to forget to say this. And so, interestingly, as anyone who knows me will know, I’m not shy about telling my story and talking to anyone. But I was nervous and I don’t get nervous very often. I should get nervous more. I was nervous to share my story. I don’t normally get nervous about that. I get nervous about other things. But to share my story at my state legislation level in Washington state where I live, and I realized that the reason is that I find the whole legislative process really intimidating and overwhelming. And, again, I feel like there’s so much like, “This person’s right. No, that person’s right.” The thing that I’ll tell anyone who’s kind of scared about that process is that you don’t have to literally figure it out on your own. Like, you can go go through the patient advocacy organizations.
Like in my case, I’ve gone through Arthritis Foundation and Creaky Joints. There’s also American College of Rheumatology. American College of Rheumatology paid my plane ticket and hotel to go to Washington, DC. Like, that’s part of their budget for patient advocacy. Same with Arthritis Foundation, they paid for me to be an advocate at the American College of Rheumatology Conference, which wasn’t as much about legislative advocacy, but it was about sharing my story. And so, I’m indebted to these organizations. They not only gave me — it wasn’t just like, here’s a plane ticket and a hotel room. They also trained me. So, a lot of times I’ll have these advocates for arthritis events, where it’s like — this is in the pre-COVID days — but where you go a day before you’re going to meet with your legislator or representatives or their staff, and they train you for a whole day.
Like, “These are the issues,” and I’m literally talking about in the American College of Rheumatology when it was a roomful of nurses, doctors, and patients alike all together, and physical therapists, occupational therapists, everyone all together, social workers, learning, “This is why step therapy is bad. These are our talking points,” so, they teach you like this is the thing we want to say to our legislators. But you can on your own, of course, feel empowered. And you can write a letter or call your legislator anytime. But the American College of Rheumatology and Arthritis Foundation and Creaky Joints, they have these kinds of campaigns; they have people, you know, as non-profits on their staff to make it really easy for you. So, I’ll put some links in the comments — in the show notes for that. I would love to come to New York and meet you someday, like, in person.
Meaghan:
I’m like, dreaming someday if we can, I don’t know, when it will feel safe enough to do a meet-up.
Cheryl:
Yes, I’m going to do an Arthritis World Tour, which all I have so far is the concept. It’s pretty catchy name, right? Arthritis World Tour. I’m just gonna go around the world and talk to people with arthritis. Yeah, so, circling back to sharing your story, can you tell the audience a little more about Bezzy PaA and and how you got involved in that? Because it’s really cool.
Meaghan:
Yeah! It’s great. So, Bezzye PsA. Bezzy has their own different apps. They’ve got one for breast cancer, rheumatoid arthritis; they’ve just started one, I believe, like two weeks ago for just psoriasis. For the folks who don’t have the arthritis portion. And it’s an app that you can do — there’s like live chats every couple nights, there’s forums, you can make a profile and connect with other people. I do writing for their explorer page. They do a lot of prospective pieces and some how-to’s. So, I’ve done like a spoonie gift guide, and I talked about your group and your program.
Cheryl:
Yay! Thank you.
Meaghan:
And, you know, I’ve done my most recent one that I submitted that should be coming out soon was like ‘Three Reasons Why Psoriatic Arthritis Is Hard to Diagnose’.
Cheryl:
Yeah, yeah. And so, and it’s free for those who don’t know.
Meaghan:
Yes, it is free.
Cheryl:
And it’s from healthline.com, which they — I am like a freelance writer for Healthline as well, and, you know, they are good at medically validating their articles, you know, and you might wonder, why is it free? A lot of these pages, a lot of these free resources and the websites, you know, they either run ads, or they do sometimes de-identify your information and sell it to, you know, third parties. So, that is just something if that’s — I know, for some people, that’s important. For me, I’m like, if it’s de-identified, that’s fine with me, like, they don’t know who I am. But for people —
Meaghan:
Yup, that’s important information.
Cheryl:
But I might be naive. So, maybe other people are like, they can still track you. So, you know, but yeah, that I have notifications un-enabled for most of my apps, but I did turn them on for the Bezzy RA. And it’s like, it’s really nice to see something pop up. Like, today we’re talking about like, one of them was podcasts about rheumatoid arthritis. I was like, oh, I’m gonna chime in and be like, “Hey, check out my podcast,” and learn about other ones. Like, you know, there’s actually a lot of podcasts for that talk about arthritis. And, you know, or there’s other ones where it’s about some of the real-life stuff, you know, that I talk about as an OT, and you know, things about like dating, like we talked; everything we talked about today.
Meaghan:
Bezzy’s really cool. I’m very excited about what they’re putting out there. And I think it creates just another level of community.
Cheryl:
Yeah, absolutely. Yeah. And, you know, one of my favorite questions to ask kind of before we wrap up is, you know, what advice do you have for newly diagnosed people with PsA and similar conditions? Yeah. It’s a 100,000 question, right.
Meaghan:
Yeah. So, I would say number one, if you decide to do your own research, be careful with what you are reading. I love Creaky Joints. It’s a great resource that because they take great information, and they put it out in a way that we can understand. The Arthritis Foundation also has pretty good information, and like you were talking about the American College of Rheumatology. I just find Creaky Joints the most like accessible as a non-medical background person. I love, whenever I have a question or concern regarding arthritis, I usually go to them first. So, if you’re going to research, just be mindful of what you’re consuming. Google can be a scary place, especially when you’re newly diagnosed and there’s a lot of information out there. So yes, that would be my number one tip, is tread carefully with self-research.
Find community. Because like I’ve talked about, like, you know, just having your people who really understand, it feels different talking to somebody with your condition than it does even like your mom or your best friend. It just, for some reason, there’s a different level of comfort and connection. And another thing I would say is always, in the weeks and days leading up to an appointment, start taking notes of what’s going on. Concerns, questions, symptoms, anything. And start like, don’t do it like the night before, because your brain tends to self-sabotage, I think, when you’re thinking too hard about something. So, I like to try like, you know, leading up to really every morning, taking what’s going on, how am I feeling, what can I let the doctor know, so that you can continue to be your own best advocate. Because you’re the one that lives in your body every day.
Cheryl:
Yeah, that makes perfect sense. And do you do, do you use like a symptom tracker app, or do you have like a paper journal? How do you track?
Meaghan:
I use That Girl With Arthritis.
Cheryl:
Oh, yes!
Meaghan:
Symptom journal. And she’s actually putting out new covers, I think, in a couple of days, maybe next week. She posted something yesterday. Her journal is great. I don’t have it by me right now, it’s in my bedroom. But it’s got, you know, a little area to talk about the weather of the day, what symptoms you’re feeling, your regular to-do list thing; it can help you track what you’ve been eating, all of that. And I used it very intensely for a few months to get like a better idea. And I tend to bring it back out when I’m flaring again. But if I’m feeling okay, I’m not as great with the journal.
Cheryl:
No, that’s how — you know, in a way, actually, that’s to me, it’s an indication that my health has gotten better, when I’ve stopped tracking as assiduously. Because —
Meaghan:
Right. You’re like, you’re not as —
Cheryl:
You’re not triggered to.
Meaghan:
Yes, yeah. You’re like, stepped out of your arthritis brain.
Cheryl:
Yeah. Yeah. And that’s, it’s, you know, because some — and so many of us really experience brain fog or cognitive challenges with memory when it comes to —
Meaghan:
And even just like, you know, medical trauma. Like, being in a doctor’s office can be intimidating. And all of those lovely thoughts that you had prepared and things you want to say just, like, gone. So, it’s nice to have that written down. And I will add, if you have a doctor that doesn’t want to take time to listen to your questions and concerns, probably find a new doctor.
Cheryl:
Yeah. Second opinions are more accessible than ever with telehealth, that’s what I tell too.
Meaghan:
Yes, utilize telehealth.
Cheryl:
If there’s not another one in your city, try it see if there’s a telehealth one that you can see virtually, or maybe drive to them just for when you need that physical exam.
Meaghan:
So, my doctor is in New York City, which is like an hour and a half drive from me, but I do, I go in like quarterly for in-person appointments, and the rest is virtual and through the messenger, which is pretty awesome.
Cheryl:
So awesome. Yeah. And is there anything else, you know, you have this platform now to share? We’ve got on our soap boxes already.
Meaghan:
I know.
Cheryl:
I know, we’ve covered everything.
Meaghan:
I really do feel like we’ve covered everything. Just again, if you are feeling not well, don’t take no for an answer. That’s the moral of my story, basically, is I knew something was wrong. I knew these doctors weren’t giving me their best. But I let it get into my head. And you have to keep pushing. Keep pushing until you get somebody that says, yep, something’s going on here. Until you get what you need. Don’t let anybody silence your pain. Because you live in your body every day. So, you are your own — you’re the expert on your body on what’s going on.
Cheryl:
Oh, that’s really, really powerful. And there’s so many times I know that I’ve said, it’s a little bit of a mixture of denial, like, I don’t want my condition to be getting worse, right. So, if I’m starting to feel like, “Oh, I might need — my biologic might be wearing off, or my body is creating antibodies, so maybe —,” you know, I like kind of ignore it. Sometimes I’m like, “Maybe it’ll just be a little blip. It’s a little mini flare, and it’ll get better.” But, you know, or I also, like, the barriers for me or like either just wanting denial and wanting things to be better than they are and then wanting to be a good patient. Like, wanting to be — like, have you read Joan Didion’s ‘The Year of Magical Thinking’? It’s really good. It’s about the year after her husband passed away. And she talked about how she heard as her husband was dying — this is my memory of it — and she the the phrase that she heard a social worker used when talking, she heard overheard a social worker talking to another one about her husband and their situation, and, you know, that he’s dying. And he was handing off the care to the next social worker is like, “Don’t worry, she’s a cool patient. Like, she’s cool,” you know. And it was like, you think, okay, that’s like something random to say. But like, she latched on to that. Like, I want to be a cool patient. I want to be — and that’s totally me. I want to be like, the good patient. I want to be the success story. And you feel like you failed, right?
Meaghan:
Right. Right. Yeah. When you have to come to your doctor — I mean, for me, it was like in, I saw my doctor at the end of August, early September, and she was like this, like almost afraid to say that, MR, Medical Remission, you know. Like, I was getting there. And then less than three months later, I had to call in and be like, hey, Cosentyx isn’t working so much anymore. So, it’s hard because yeah, you feel like you’ve achieved this moment, and then not so much.
Cheryl:
And then when you don’t have that validation of a diagnosis, it’s even harder, right. Because then you’re like, well, everyone’s telling me — but yeah, that’s something I really wish I had done earlier, is really trusted myself and my body. Because we did go to quite a few different people to get second opinions and everything but they still cut me, like, “You’re just anxious. You’re just a hypochondriac,” and then it just kind of like —
Meaghan:
You start to internalize it. It’s really hard not to. Yeah, unfortunately.
Cheryl:
Nobody wants to be sick, especially in the pandemic, right. Like, nobody wants to go —
Meaghan:
Yeah, nobody wants to be put on — I’m on three immunosuppressants right now.
Cheryl:
Like, yeah, yeah.
Meaghan:
Nobody wants this life.
Cheryl:
I remember once being like, it’s a really extremely frustrating and sad experience to be like, I’m actually under reporting my pain and being treated as if I’m over reporting. Like, my doctor knows now. She’s like, “When Cheryl says, ‘Oh, it’s, you know, it’s not that — it’s kind of bad, but it’s not that bad,'” she knows that it’s like terrible, you know. Like, I’m about to die.
Meaghan:
And I think that’s another like important point too, is like developing a relationship with a doctor is so key for chronic illness of any kind. Because really, we need continuous, apparently continuous care for very long time. So, if you can get somebody that’s going to be like your partner, and is going to be collaborative with you, and not just say, “This is what you need to do,” more like, “How about what do you think about this option?”
Cheryl:
Totally.
Meaghan:
Because you should be respected as the patient, you know, like, this is your life and your body. You shouldn’t just be going to this expert and them telling you this, that, and that, and goodbye. It should really be a partnership, because it’s so long-term.
Cheryl:
It really is. I know I’m really lucky I encountered my amazing rheumatologist right after she was right done with residency. So, she was new, but she did have all the latest research and she was on top of it. And so, I’m like, as long as you don’t move away from Seattle, or you know, this state, I’m following you wherever. So yeah, having that relationship. It’s so key. Like, the first thing she asked me in the appointments was like, “Show me a picture of your son,” or, “Show me a picture of your dog,” and then we just did like a house remodel. She’s like, “Show me your house,” like, she actually cares who I am as a person, you know, and that’s huge. And some people might not. It’s about getting what you want out of it. Some people are like, “Actually, I’m overwhelmed right now. Just tell me what to do.” You know, kind of how I was your post —
Meaghan:
That’s a very good point.
Cheryl:
But anyway, yeah, thank you so much. This has been so great. I feel like I could talk to you for five hours.
Meaghan:
We’ll do a live, for sure.
Cheryl:
Yeah, we’ll do a live and then can you just tell people listening where they can find you? I’ll put the links in the show notes too.
Meaghan:
So, my Instagram and my Tik Tok are both @arthritis_meggie. I need to get better about posting to Tik Tok, because I’m a millennial.
Cheryl:
I’m an older millennial. I’m like on the border of — I was born 1981. So, I’m like the youngest of Gen X or the oldest millennial.
Meaghan:
I’m like a true Millennial.
Cheryl:
You’re like a true millennial. Yeah.
Meaghan:
I have a Facebook. I have a Facebook page for Arthritis Meggie as well. And you can find me on the PsA Bezzy app.
Cheryl:
Yeah. Awesome. Are you listed as your full name?
Meaghan:
My name is listed as Meaghan Quirin on Bezzy.
Cheryl:
Okay. Perfect. Is that Irish?
Meaghan:
It is.
Cheryl:
Okay, cool.
Meaghan:
My last name — my last name is actually not Irish. My first name is. It’s M-E-A-G-H-A-N. Extremely Irish. My dad, it’s technically his last name is Murphy, but he was adopted.
Cheryl:
Oh, okay. Oh, wow.
Meaghan:
Meaghan Murphy, was very Irish.
Cheryl:
I love that. M-squared. Awesome. Well, thank you so, so much. This has been really — I know it takes emotional labor to tell your story and share the challenges you’ve had and how you have persevered. So, I know there’s people listening who are going to feel more empowered after listening to this. So, thank you.
Meaghan:
Thank you, Cheryl. So good to talk.
Cheryl:
Yay. Bye-bye for now.
Meaghan:
Bye!
[Ending music]
Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.
