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its like managing a circus how m
Patient Stories, Podcast

“It’s Like Managing a Circus”: How Maggie Thrives with Multiple Chronic Illnesses

3 weeks ago
86 min read
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Episode Summary

What’s it like to carve out a rich, meaningful life while managing multiple chronic illnesses? In this episode, Maggie shares valuable insights from life with axial spondyloarthritis, sjogren’s, osteoarthritis, hypermobility, migraine, and POTS. She also shares her treatment journey which she divides into a “discovery phase, treatment phase, and tinkering phase.”

Maggie and Cheryl discuss practical advice for managing multiple chronic illnesses, including the importance of social support and finding joy in daily experiences. They also discuss their best coping skills for times when managing your health feels like “orchestrating a circus.” Ultimately, Maggie and Cheryl discuss the importance of savoring life’s moments and adapting to new ways of living, rather than trying solely to return to a pre-illness lifestyle.

Themes of this episode:

  • Maggie’s Diagnosis Story
  • Tips for Managing Chronic Illness
  • Social Support and Sharing Experiences
  • Mindfulness and learning to be present
  • Adapting to New Realities
  • Joy and Personal Fulfillment
  • Healthcare System Challenges

Medical disclaimer: 

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

Episode Sponsors

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

Speaker Bios:

Maggie Russell

My current diagnoses are Axial Spondylitis, Sjogren’s Syndrome, Raynaud’s disease, and vestibular migraine (vertigo induced by migraine). That combination can sometimes lead to a diagnosis of Mixed Connective Tissue Disease.  I have neurological involvement with Sjogren’s which includes Postural Orthostatic Tachycardia (POTS). Inflammation from Sjogren’s, and the Axial Spondylitis, has caused euthyroid, which is common among rheum-ers (about 20% of folks with RA are euthyroid). It means hypothyroidism caused by inflammation. I am a former attorney who focused on product liability and consumer fraud litigation, mostly on the trial preparation side. I also do freelance writing on finance and investment and creative non-fiction (poetry, essays).  I also am a Christian and think we sometimes don’t hear from non-fundamentalist Christians about faith and illness.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Full Episode Transcript: 

Cheryl:  00:00

I’m so excited today to have Maggie Russell on The Arthritis Life podcast. Welcome, Maggie. So, happy to have you here. Yay! Can you let everyone know quickly — this is a topical question; I know you just moved — where do you live? And what is your relationship to arthritis/chronic illness? 

Maggie:  00:18

Sure. I now live in Nashville, Tennessee for the last, like, week. I think there’s a little bit of a, you know, disagreement about whether where I live is actually Nashville or not. It’s called Green Hills. And it’s its own thing, but it’s not. It’s still in Nashville. So, like, right on the kind of southern part of Nashville that goes into a suburb of Brentwood, which is more than most of the country music stars live.

Cheryl:  00:46

That’s exciting. And where are you from, originally?

Maggie:  00:49

I grew up in Connecticut. And then, we moved to DC. And then, I was sort of in a variety of places for school. And then, I moved to Philadelphia. So, I lived in Philly for 15, 16 years then we were in Utah, which is where I started with you guys, and then got out of there, and now we’re in Tennessee. 

Cheryl:  01:09

Wow. 

Maggie:  01:10

Oh, wait, I forgot the second part. 

Cheryl:  01:11

Yeah. What is your relationship to arthritis/chronic illness?

Maggie:  01:16

So, my dad had axial spondylosis — sorry, ankylosing spondylitis, which I didn’t realize. We just knew it as his arthritis. So, then when I got very sick, it took a while to figure out that I also had a sort of version of it, which is axial spondylitis, which is sort of the bigger umbrella and then the ankylosing comes underneath that. So, I have that. I have what I like to call, like, old lady arthritis, which is just regular reference, just my knees from running, the osteoarthritis. And chronic illness. So, I am very mildly hypermobile, like part of the Ehlers-Danlos spectrum. I’m sort of all the way on the juvy team of that. And that was sort of what was getting me into understanding connective tissue issues, which is, you know, part of arthritis. And that process started me off understanding sort of chronic illnesses. And I also have symptoms consistent with Sjögren’s, like the biopsy that I’ve had is pretty much Sjögren’s. And then, Raynaud’s. And then, I have migraines that are sort of drifting towards chronic migraine, chronic migraines, actually, 15 to 30 days I don’t have that. I have it about four, for four days a month-ish, unless there’s storms. Did I nail all of that? I can’t think of all —

Cheryl:  02:48

It’s a lot. It’s a lot a lot to keep track of. Yeah, yeah. The vestibular migraines.

Maggie:  02:55

Vestibular — sorry, the vestibular migraines, and I mentioned this only because it was hard for me to figure out and then I had to sort of lead some doctors in that direction. Vestibular migraines are, can happen, your migraines can change after bad illness. Mine changed after a really bad illness in April of 2023, from regular painful migraines to vestibular which is really bad vertigo, very disorienting vertigo; you feel like you’re falling down. And then, that’s actually common, and it can happen to people after COVID. So, if anyone listening all the sudden is like, why am I not dizzy, but like literally, I feel like I’m falling. That’s something that you’ll see a neurologist about.

Cheryl:  03:39

I actually did that myself, because it was so weird, because the only time it was happening was it precisely an hour after I’d fall asleep, one day out of the week for a while, and then it kind of went to once every two weeks, and then once a month, and it just went away. But I would feel, I would wake up feeling distinctly like I was falling. And it would be really panic inducing. But it wasn’t, I’ve had panic attacks before and it was not at all consistent with those because it wasn’t occurring around any sort of like events, and it was always exactly an hour after I went to sleep. And no one knows, we never figured out. The only correlation we can make to it was to COVID because it started immediately after my first time I had COVID.

Maggie:  04:19

Yeah, and I also forgot that sometimes folks with Sjögren’s can also have some neurological involvement. So, it’s common to have some sort of migraines and I think learning about migraine can help people understand when they have headaches versus migraine because migraine can really, it can be responsive to that whole different set of drugs. And so, there’s a lot of migraines that’s like nausea and feeling uncomfortable and that kind of thing that’s not just headache. But I also have POTS, the Postural Orthostatic Tachycardia Syndrome. I’m so proud of myself for nailing that. Yeah, that’s my, again, like the same like JV team versus varsity, folks who have just POTS, very much hats off to them for the way they live their lives. Mine is much more mild. And it was easily resolved by just being really careful about sleep and movement. I mean salt and movement, and sleep is also helpful. So, and I mentioned POTS because a lot of folks who have some of the inflammatory arthritis’ have an overlap with that and don’t know, like, why am I feeling dizzy? Why, you know, that kind of thing. So, it’s another one to look into. 

Cheryl:  05:30

Yeah, I only recently learned actually that also people with any form of inflammatory arthritis or autoimmune forms of arthritis like rheumatoid or axial spondyloarthritis also are more likely to have migraine to begin with. So, I didn’t know that, yeah, no one knows if it’s causal or just correlation. And so, that I really, yeah, that’s something I learned from Creaky Joints.

Maggie:  05:53

I love Creaky Joints. And one more thing, which is the inflammation from the axial spondylitis and from Sjögren’s, like a prolonged period of inflammation can affect how your thyroid hormones become converted. So, when you have interference with the conversion of one hormone to another, that can lead to hypothyroidism. It’s, your thyroid can be functioning. It’s like having a television on but you don’t have the right like converter to get the cable into the house. That’s called euthyroid. It usually only happens to people who are like in the hospital with, you know, double pneumonia. But it’s common, which is 20% of folks who have RA can be euthyroid. And folks might not know it can be very dangerous to be hyperthyroid, hyperthyroid, hypothyroid. It can affect your you know how your heart works, etc. and also can make you really freakin’ tired and have brain fog. 

So, I think that, for me, I was lucky that I had someone who’s a bit of a thyroid expert in my family, and that they were like, “You know what, I honestly think all these symptoms are really lining up with thyroid, let’s get a full thyroid panel instead of just checking your thyroid.” And when that happened, we could see consistently that one of my thyroid hormones was just well below what it should be, even with some supplementation, and then I finally have just gotten the exact right kind of — it’s like a, just take the hormone that’s not being converted. So, that’s also I think that’s something that a lot of people don’t know about RA, or any of the other rheumatoid arthritis’ is, you know, that kind of inflammation can affect how the rest of your body functions, you know, so, yeah.

Cheryl:  07:39

Yeah, there’s this kind of this vague umbrella that you get told that there’s systemic symptoms, but it’s not — usually people refer to for rheumatoid arthritis, the eyes, it can affect the eyes, lung, and the heart. Those are the big three that are typically affected for systemic symptoms. But there’s so many more. Like you’re saying, thyroid, there could be, you know, I mean, endless. It’s, you know, inflammation, one of the talks I went to at one of the conferences just stuck on my head. They said, you know, inflammation doesn’t like to stay in one place. It travels. Yeah, I thought that was just — I don’t know why it just stuck in my head. But, you know, so an inflammation might start in the joint, you know, in your spine or in your periphery, like with rheumatoid arthritis and the little, you know, MCP’s, metacarpophalangeal joint, so the knuckles. And then, it travels throughout the body and you know, wreaks havoc. So, you know, that’s a lot. 

You have, we were talking before we started recording about when you write a bio for yourself as a chronic illness patient, it’s like what’s on my chronic illness resume? So, you’ve had a lot of experience, healthcare experience. But, you know, I would love to hear more about specifically your diagnosis story. How did you get diagnosed with Sjögren’s and with axial spondyloarthritis? I don’t even, I actually don’t know, even though I know you and I’m sorry if I forgot, but which one came first? I think the axial spondyloarthritis came first or —?

Maggie:  09:07

Well, so that was a moving target. So, I had, again, I have some medical folks in my family and they had said, you know, you really kind of seem like you have a connective tissue disorder. These are the issues you have, but that’s not my specialty. Kind of waxed and waned about stuff during the pandemic from like 2020 I have these symptoms that seemed really unrelated to me. Like, one was I woke up in the middle of the night trying to figure out how I had gotten something in my eye. So painful, so distressing, that my husband was like, do we need to go to ER and I was like, “For something in my eye?” that I was sleeping, like, I can’t understand what that was. And it was so bad. I remember I had to put off a call the next day. I had a like a call with someone, a fairly important like partner or something. And I said, “You know, is there any way you can move this call from like 9:30 to 11:30? Random, I have this eye issue,” and everyone was like, “Yeah, we don’t care.” 

I also had what I, you know, I called it as thirst, I didn’t think of it as dry mouth. But it would be really bad and to the point where I would just, like, urgently need something with caffeine. Not caffeine, something with carbonation. So, either like a really aggressively bubbly seltzer or like a Diet Coke. So, we’d started just having that in the house because it would be this these moments of just like, stunning, like, almost like a, like an urgency that has almost like a little bit of panic to it with the dry mouth. And I had also, before the pandemic started like in February, I had from February into like late 2019, had gone back to the eye doctor and was like, “My eyes are like really dry, like what am I doing?”, “Oh, just use eye drops.” During the pandemic, not realizing this, I thought it was because we lived in a new house. I had a humidifier on and I had a humidifier on my desk. So, I had these like dry eyes and dry mouth even with like, you know, Florida conditions, like just as humid as possible. 

And I don’t think I knew enough about Sjögren’s. I think I looked something up and was like, hey, what about this? And I was like, it just doesn’t seem to, I mean, what do I know about this? I don’t, I’ve never met anybody that had it, never talked about it. I had some other symptoms of Sjögren’s that I went to a gynecologist for and just it was hard to line everything up because I don’t think, as somebody who doesn’t have medical training, I wouldn’t have thought, what’s in common between your eyes, your mouth and, you know, other parts of you? I wouldn’t have thought oh, those are all part of like the, you know, your mucus membranes. I never would have thought that that was together. I went to my doctor, you know, like GP, “Why am I thirsty all the time?” kind of thing. Now I also have a, had a weird rash that like, stumped the chumps. Like, no one knew what it was, it was just very fun. 

So, I had COVID twice, and COVID in 20 — COVID in December 2021, January 2022. Then I had COVID again, December 2022, January 2023. And both of those times were kind of knocking me down and I couldn’t get back up. I would sort of slowly rise back up, but then got knocked down again. And then, I got something, I got some really bad virus, which I think we now think was a flare of Epstein Barr, that my system was so beat up from COVID. And I didn’t take time to recover. And I was just really knocking on the door being like, do I have long COVID? Is that what’s happening? Like in March, kind of being like, I think I need to take some time off of work and just like sleep for two or three weeks. And then, there was just, I was working, I think I got a migraine was what happened. And I was working, got a migraine. I like stood up from my desk and was like super dizzy, and just felt like I was going to faint. 

The next day, one of my friends whose sister-in-law has POTS was like, “It kind of sound like you have POTS.” And I was like, why would that just start out of the blue? And then, that night I just couldn’t swallow, couldn’t chew, wasn’t finishing my sentences. Things didn’t make sense. You know, I’m normally a pretty articulate person, you know, I’ve worked on a lot of legal briefs. I even, like, my claim to fame is a footnote in supreme court brief for, like, one reiteration. 

Cheryl:  13:25

Okay, so we —

Maggie:  13:25

No, I didn’t make it into the final. 

Cheryl:  13:27

We forgot, I forgot to say this earlier that you’re a lawyer by training 

Maggie:  13:30

I used to be. I used to be a lawyer. Yeah.

Cheryl:  13:33

In my mind, you’re always a lawyer. Once a lawyer, always a lawyer.

Maggie:  13:37

Yeah, don’t tell that to the Bar Association’s. Yeah. But I mean, I’ve been working on a fairly complicated brief in a fairly, I don’t know, like, well-known set of issues. And I mean, like, really weird, like, equitable arguments about clean hands. And if no one cares, except really weird lawyers. And, like, within 24 hours, I was not able to finish sentences. And my husband took me to ER being worried that it was something like myasthenia gravis, which starts head down and then can lead towards paralysis if you don’t jump on it. We went first to urgent care because I was like, I’m not an emergency. And then, urgent care was like, so nice. Off you go to urgent care, off you go to emergency room. They’re like, “That’s cute, we can’t help you. Go to emergency room.” And the resident I had was like, “I really think you have an autoimmune disease. Let’s run all these different tests.” And it came back with a really high ANA. 

I don’t know how much people really talk about this, because there are lots of different reasons for someone to be sort of mildly positive in the ANA, but once you get above like, you know, into — mine was 1:320 which has only a 3% chance of being related to something else. So, it’s like you have some autoimmune disease. We don’t know what it is. We’ll figure it out. No help. No anything. Couldn’t get into rheumatologist even on an emergency referral, just kept trying to get in. I had three regular referrals and an emergency referral to finally get in with somebody and it was going to be all the way in August, and it was like May by the time we were begging. So, it’s really, it’s really tough for people these days; it’s extremely tough. So, here I was, like, sometimes couldn’t get out of bed, really bad dizziness, vertigo, etc. 

By the time I did get into a rheumatologist, in my head, I believe what he did was look at my profile and be like, “This is way too many weird things. I don’t want to handle this woman. It’s just going to be too complicated.” Like, this is the perception that I had. And he was like, I see neurological issues, off you go to neurology. And it’s a nine month wait usually to get into neurology. However, one of the things he wanted to do was because I had this really bad muscle pain that he’s like, that doesn’t make sense, which I now understand was partially Sjögren’s and partially enthesitis, which is I think something people with inflammatory arthritis, especially in the spine, it’s really helpful to know that like, enthesitis is a thing. It’s a thing that happens to a lot of people. It doesn’t mean that you have some other condition anyway. 

Cheryl:  16:26

And that is inflammation of the enthesis, which is where the ligament or tendon attaches to the bone. I’m reading this from online just to make sure I say it correctly, because sometimes my brain scrambles terms. So, it’s the medical term for inflammation of one or more entheses, which is the site within which connective tissues such as tendons, ligaments attach to bones, and that’s much more common for whatever reason in psoriatic arthritis and ankylosing spondylitis, axial spondyloarthritis, than rheumatoid arthritis but it certainly can happen in any of the inflammatories.

Maggie:  16:58

Yeah, I think when I had some help around that, from like, the Reddit boards, it was usually on like a psoriatic person and they had a lot of help because it can really nail your feet. Like, I remember waking up and being like, “I haven’t been doing anything. Why are my heels so bad?” And I worked retail in heels and like, you know, ran marathons and like, why did my feet hurt so badly? Like, my feet hurt more than after I finished a marathon. And so, there were some helpful tips about like just figure out whatever shoe works for you and buy three of them is kind of the only way to go. 

So, because I had — and I could point to my knee and say it hurts from my knee joint up two inches, it hurts from my heels, and like it was just really classic sort of pain. I had pain in my shoulders, too, which can be related to the axial spondylitis and the ankylosing spondylitis. So, you know, I had some muscle tests because they thought, oh, you know your symptoms are consistent with MS — which they were not. Just having muscle pain is not enough. So, I got very concerned about MS because it’s a, you know, serious and very frightening disease for a lot of people.

Cheryl:  18:07

And if you’re having headaches and eye issues, too, those overlap. I mean, I was tested for MS also, actually 10 years after my diagnosis of RA. But long story short, it’s not unusual to have to rule that out at some point though.

Maggie:  18:22

I was lucky enough that the MS test, which is this not super comfortable, like, plug electrodes into your parts of your body and run electricity through it, that normally what you need to do is see the neurologist, do the test, and then have the evaluation with a neurologist. I got this lovely man. If anyone is in Utah and needs a neurologist, I highly recommend Dr. [Name 18:48]. He’s just, was very smart and very fabulous. And he was like, “Let’s put pause, we have time, let’s work through this,” and explained to me like so that I wouldn’t worry like what is, what are symptoms of, you know, MS, what it would feel like, how it would go, versus what the symptoms that I had. And then, he was able to help me with vestibular migraine, was very helpful and really helped me be more aggressive about it and understand why to be aggressive about treating migraine. So, that sort of knocked MS out. 

And then, I switched from one medical system, which was the University of Utah system over to the private medical system, which was Intermountain Health and got a really lovely rheumatologist there who had lots of smart ideas. The thing for me was that the blood test that I came back for was for mixed connective tissue disease. It was sort of in the mildly positive, you know, kind of realm. Mixed connective tissue disease is where you have I think of it as a pu pu platter, like little appetizers, the pu pu platter of all the connective tissue diseases, which is Sjögren’s, one of the arthritis’, you know, whether it’s RA, AS, psoriatic, you know, pick your poison, and Raynaud’s. And then, usually, one of the myositis, which it can be your skin, it can be your muscles, can be your internal organs. Because I didn’t have a diagnosis of Raynaud’s people were ruling that out and sort of didn’t know what to do. I now have a diagnosis of Raynaud’s, which I mentioned. 

Cheryl:  20:24

Oh, yeah.

Maggie:  20:25

A hot mess. 

Cheryl:  20:28

I always forget that I had Raynaud’s long before anything else. Like, I have memories of me playing soccer in cold weather and just my fingertips and my toes were just white. I mean, white as in totally no circulation. Yeah.

Maggie:  20:44

So, I’m a very pale person. And I’m remarkably pale person. I am paler than many folks who are from Ireland pale. And so, I’m saying to my husband, “How am I gonna know if I’m white?”

Cheryl:  20:59

You know, yeah. 

Maggie:  21:01

Really white. Like, am I gonna catch that? However, he had said to me, “Like, your hands are so cold, there’s no way you don’t have the connective tissue disease, like, you must have Raynaud’s,” and I’d had it like, you know, one of the pediatricians had said something about me when I was a little kid about having — and my sister heard ‘frosting toes’. So, it was like a joke when I was growing up about having like, you know, icicle toes, frosting toes. So, I now understand that I have Raynaud’s. The Sjögren’s test, the SSA —? Anyway, there’s two Sjögren’s tests that they do. About 40% of folks who do have Sjögren’s don’t test positive on those things. 

So, it was a little bit difficult to get a diagnosis, which is why I then ended up finally getting the biopsy when I had some other at some other, you know, sort of mouth issues. I had a salivary stone, I had a tonsil stone, I had inflamed tissue behind that. And I wasn’t able to swallow like the pam, like, pills. I was on a lot of — and you can hear it in my voice, because it’s usually not this bad — I had a lot of like swallowing issues, I had a lot of mushy food. I like figured out the 17 different ways you can eat bone broth to get some protein. And I think it was really, it was particularly bad. 

So, when it comes to diagnosis, I think one of the things that I sort of needed to, like, own and accept was the idea that it really does take a very long time to get diagnosed. Not only because it’s impossible, you have to get an all these other specialists who can rule things out and get all these tests done. But it takes forever to get into the doctor to start all that process. And it’s just really long, it’s just — and I think, especially for people who have a bunch of different stuff going on, maybe even people during the pandemic who just kind of weren’t going to the doctor because if it wasn’t that bad, you know, let the doctor be for people who, you know, really, that’s sort of what my mind was like, “Hey, my eyes are dry, and I can’t you know, I’m thirsty all the time, is that really enough to go to the doctor during you know, the pandemic? Let the poor doctor, you know, have their time.” 

So, I understand sort of a medical journey as there’s the discovery phase and the treatment phase. And after you’ve gotten out of discovery into the treatment phase, you’re kind of tinkering with what treatments you need. And I think really the biopsy that I had in May — it’s June now — the biopsy I had in May was the sort of the like, yes, we all agree that you have Sjögren’s. And it had been like all these ENT’s and speech therapists, “You have Sjögren’s. We can see it, but we can’t diagnose you with it, because it has to be diagnosed by a rheumatologist,” so.

Cheryl:  23:50

That’s — sorry, sorry, you can continue, if you need to get some water — speaking of that, yeah, I really think that, yeah, I will say for the record, I myself didn’t know how systemic Sjögren’s was. And actually, they are thinking about changing the name, they, like, medical entities are considering changing the name just to systemic Sjögren’s disease versus just Sjögren’s. Because, you know, your ability to swallow is such a primary primal life function, that if that’s disrupted, that is huge. And like you said, it’s a mucus membrane, it’s the membranes of your entire body, not just your eyes and your mouth. That might be where you feel it but it can be your genital area, it could be inside all of your organs that affects digestion, the entire way down the track from the esophagus to the colon. I mean, this is such a major condition that is beyond, so beyond dry eyes, that hopefully just you sharing your story is helping people.

Maggie:  24:51

Well, I think that’s important, too, because I had been to a variety of gastrointestinal specialists, you know, and had EMG’s and had colonoscopies and had all of these things because I had these like Crohn’s-like symptoms, but they couldn’t find the Crohn’s. I was tested for celiac, I was tested for all these different things, and they just couldn’t figure it out. And I now understand that was probably Sjögren’s. I think the Sjögren’s Foundation, which I hope you’ll link in the show notes, and I’m sorry to belabor this but I think Sjögren’s, the overlap between Sjögren’s and the rheumatic arthritis’ is actually kind of high, right, relatively high.

Cheryl:  25:34

I don’t know the number off the top my head because Sjögren’s is very under-diagnosed. 

Maggie:  25:39

Super under-diagnosed. 

Cheryl:  25:41

But yeah, and I actually, if I look back, you know, my own doctor has basically said like, it’s such a subjective diagnosis at this point that the last time I talked to her about it — because all my very first symptoms were GI. All, a hundred percent. Like, it was the dry eyes. So, that’s actually what I was one of the doctor for before I was going for my, quote unquote, ‘sprained finger’ because again, I was triaging the sprained finger, too, which ended up, it’s actually was rheumatoid arthritis, my first joint symptom. But yeah, I went to the GI, all the GI doctors for, you know, I got diagnosed with gastroparesis, which is delayed stomach emptying, which is part of autonomic nervous system dysfunction. Which again, can overlap with things like POTS and can overlap with people with RA are more likely to have autonomic nervous dysfunction. But to this day, I don’t know if I have Sjögren’s or not, because my doctors are kinda like, “It wouldn’t really change our treatment plan.” But to me, it would help me know, you know, it would help me —

Maggie:  26:35

So, I want to, I want to challenge that narrative for a minute because that’s what — I think that’s very common, I think that’s sort of the conventional wisdom, if you will. And I think that’s how rheumatologists approach Sjögren’s. I think, ENT doctors, ear, nose, and throat doctors approach it differently because the attacking your mucus membranes is not just like, “Oh, you have some dry mouth.” It attacks your salivary glands and can do damage to your salivary glands that cannot be fixed. The salivary stone that I had, you know, you could see on a CT scan, and they’re like, “Wow, that’s,” they said, you know, “It’s not that big,” but then they could feel it and be like, “Oh, my God, it’s, that’s crazy.” I managed somehow to pass it. I mean, it was painful. It was, you know, not comfortable in eating. I’d sometimes be like, man, it’s too much trouble to eat. Which is not great and not really life sustaining. 

But when I then went to have surgery, the really great surgeon that I had said, you know, “Occasionally they’ll pass before we can get your surgery scheduled. But, you know, I think you’re just so large, that’s not going to happen.” It did actually pass. I was actually at a funeral, I went to bite into a pistachio, and the saltiness of it just broke something out and I was in so much pain, like, eye-popping pain. I just happened to have, one of the cousins happened to be like a radiologist and he’s like, “Here’s the things I think you need to do,” and I was like, “Sounds great,” and did them, and it really did help. It took a couple hours before I was like, able to really kind of zone back in and not be distracted by the pain. However, you know, you can have a salivary gland sort of collapse. So, a salivary stone is like a kidney stone. It’s a build-up of I think it’s calcium, maybe, and then it can get to a point where it can’t pass through the gland that it needs to go through. And so, just like a kidney stone you try to do everything you can to pass it. And then, if it can’t, you have to have surgery. So, I had surgery which was pretty — sorry, I keep getting phone calls. I had surgery. It was pretty minor. And they said, “You know, it can be that your salivary gland can collapse.” Do you mind if we just stopped for just a second, for calls? [Pause]

I feel like most of most of the Sjögren’s stuff that we’re talking about, like, there has been some incredible webinars from the Sjögren’s Foundation. And one of the things that they really hammer on which is well, you know, “Whether we diagnose you or don’t, the treatment is the same. Drink lots of water, use eyedrops, have a humidifier.” Well, but that’s not great, because water is not the same thing as saliva. And if you’re not producing — saliva is an enzyme, so if you’re not producing enough saliva, you could be having trouble breaking your food down, which then actually is a nutrition issue. So, you know, instead of just saying ‘Drink lots of water’, you can, you know, suck on sour candies like that can promote saliva production. I think you sort of frequently see me with a Poppi in my hands because, yeah, they’re really good. And I know they’re currently in litigation about whether they have the health claims that they say they have, but for me, they’re a little bit sour. And so, a little sip of that does a lot more in terms of helping dry mouth. And then, just like the seltzer, though, they’re delicious. And we can debate the merits of which one is better. 

But you know, like, you need saliva to protect your teeth, not water. You need saliva to swallow things. So, I think that’s sort of where I take, I challenge that narrative because it is actually different. If you just sort of had dry mouth for a while because of your allergy meds, you would drink water or sit by humidifier. But if you have something that’s attacking your mucus membranes and causing damage to them, like you may want to interfere. I think this is sort of one of the things that I’ve heard you say about RA, which is like RA is damaging your joints and you want to stop that. So, while you may be able to sort of assuage your symptoms through a variety of lifestyle things like diet, exercise, etc, like the damage to your joints is something that’s really important to pay attention to. That’s why, you know, medication is can be important. 

So, for Sjögren’s, like the one of the best things that I had to help was something called pilocarpine, which many, many people hate. But people with Sjögren’s are like, hello, I can swallow, I can create tears, I have enough moisture in my eyes to create tears. So, the pilocarpine helps a lot. I got pilocarpine from my dentist, and then asked an ENT to switch the script over, because dentists, it’s just a lot more cumbersome for them to write prescriptions. Dentists also will jump in on Sjögren’s because they understand the damage that’s happening to your teeth. ENT’s are much more aggressive about it because of what can happen, you know. In addition to like sucking on hard candies, or sort of those sort of things, there’s an inhaler that you can have that sort of fits under your face, and you can inhale saline. And that can really help sort of preserve all that. 

So, I understand that the conventional wisdom is sort of avoid medication, and then do the lowest dose necessary. But for me, when I did get a script for Plaquenil, and it’s been about a little bit over a month now. I mean, I was really quickly able to see how Plaquenil helped me. The muscle pain that I had went away. Some of my joint pain is better. Unfortunately, it does nothing for my axial spondylitis. But that’s what methotrexate and Humira is for. And, but like stomach issues that I’d had for, I mean, I think I started going to the doctor about them in like 2011, 2012, those are almost entirely resolved. The weird rash, I had pretty much gone. And that’s, I mean, like, in the span of a month to have a lot of your symptoms be resolved by, you know, the nice thing about methotrexate, at least for those taking the pill form, like it’s off patent. It’s like $3 to get methotrexate.

Cheryl:  33:04

But yeah, that’s what was so devastating when it was being — there was lack of access to it due to the whole legal issue with it also being used for pregnancy termination, that you’re like, you’re literally taking away the only inexpensive medication for rheumatoid arthritis, like everything, like, you have a $3 methotrexate or you have $40,000 biologics, like there is not a lot of in between. But yeah, and you mentioned, you know, that conventional wisdom —

Maggie:  33:36

To finish that thought, Plaquenil is off patent, too. So, Plaquenil is like $7, and it’s those drugs — methotrexate obviously has lots of side effects. And there’s lots of reasons why people would not be able to stay on it. Plaquenil has some, like, serious, like potential side effects for some people involving the eyes. But like, to have that successful, in my opinion, of a medication. I mean, I suffered, just had none of the things that I like to do, which were like reading and knitting, you know, like, super exciting homebody life that I have, like, I couldn’t do those things. I didn’t have the energy to follow up with someone who texted me. So, the loneliness involved with it was really high. So, then once I started methotrexate, like, overnight, I was like, “Ooh, I’m back to myself.” And the same thing with Plaquenil. Not quite overnight, but really quickly, I was like, hey, I can go for a walk without having gripping muscle cramps, you know? 

Cheryl:  34:32

Yeah.

Maggie:  34:32

Sorry. I just wanted to go that the Plaquenil is also off patent. Yeah. Versus Humira.

Cheryl:  34:36

They’re called like the conventional DMARDs, like sulfasalazine. Disease modifying — DMARD means disease modifying antirheumatic drugs. So, sulfasalazine, methotrexate, Plaquenil. They’re in like the cheaper category. They’re not as targeted to specifically the cells in like rheumatoid arthritis and other inflammatory arthritis. But no, I was totally, I know, you know, you’re preaching to the choir. You know, to me, talking about medications, you know, that basically talking about the wisdom of taking medications, that they’re so effective. And the thought, the conventional wisdom I had heard from Sjögren’s was that there simply weren’t any medications available. But there aren’t any that are targeted to the cells that are causing the disease. But it sounds like they’re actually, I mean, what you mentioned is a medication, that can give you, the symptoms, that can target like if the disease process is causing you to not have enough saliva, and pilocarpine gives you saliva, then it’s giving you an effective treatment, even though it’s not treating the underlying cause as to why you don’t have saliva. 

Maggie:  35:45

Right. And so, for me, pilocarpine also helped solve a lot of my stomach problems.

Cheryl:  35:49

I’m literally going to talk to my doctor about this. And if you saw me looking at my phone, I was looking at it because I’m seeing her on Friday, I have my little notes app, because I’m like, this is exciting, because I — anyway, so that’s my story. Yeah, I’m here to talk about your story, but.

Maggie:  36:02

Pilocarpine. Also off patent. So, you know, for someone who has like, I mean, I don’t even know if it’s like, I used to have a friend who would say like, “I have enough issues to make up a subscription.” You know, like, I basically have like a subscription addition, you know, we’ve got the whole Martha Stewart collection of all the things, right. Like I have all of that and to be able to have medication that — so, I have the thyroid medication. And I think both of those are relatively cheap. So, I have this little like, handful of, you know, magic potions that cost like $3, $5, whatever it is. 

And I also have Humira that, yeah, so much money. So, much money that I called my insurance company was like, “I have this bill here for $500. And I was just wondering what portion is mine, and what portion is yours?” And they’re like, no, no, that’s your portion. And it was like, “Oh, well, then what’s your portion?” And they said, “It’s the 5500 that we’re covering.” And I was like, great. Can I make you some cupcakes or —? Just keep covering that. Yeah, no, I mean, it is really expensive. And it’s, it’s very, it’s effective, right. All the biologics are effective. But, man, I don’t know. I really remember stopping and thinking like, oh, how do people do this?

Cheryl:  37:22

Well, even though — and now there’s biosimilars, but they’re only, like, they’re 90% of the cost. So, they’re really not —  so, once they got out of the, you’re a lawyer, I don’t remember the names for all this stuff, but they’re out of the patented phase or whatever when only they can make the drug, now you can have biosimilars. But it brought the price from $5,500 to $4,600, you know, you’re like, okay, great, a month, you know, this is expensive. 

So, but I want to ask something before I forget and before we move on to the next topic, which is as somebody who has been, you’re very highly intelligent and very analytical, you have training in, you know, specifically in the legal fields to be able to be, like, get to the heart of things. What was it like for you, and how did you cope with all this ambiguity and lack of answers of when you were going through this, like, I definitely in your case, would call a diagnostic purgatory, with your, like, it could be this, let’s refer to the rheumatologist. You finally get there, then they’re like, neurologists. And then, you finally get there, and then they’re like, go back to the gastro. And I’m like, how did you cope? Or it’s okay, if you didn’t cope in healthy ways.

Maggie:  38:28

I didn’t, I didn’t cope. I didn’t, there was a lot of screaming into a pillow. I think, like, honestly, there’s I think it’s common and I think we should talk about it more that the, like, the grief, I think we talked a little bit about depression in terms of health things, but I think there’s a grief period, and it can get, you can get stuck in it. And I know like we had in the last Rheum to THRIVE support group, we were talking about sort of the hope roller coaster where you start getting every time there’s like, “Hey, there’s a new medication,” you’re like, I can’t hope about it because I cannot have my heart broken again. I think for me, there was a process of just, like, you literally are just sort of waiting. I think, for me, part of the problem was because I had to let go of my job in May when we didn’t know what was wrong with me and I had very lovely partners who were like, “Come on back as soon as you’re ready, we’ll take it 10 hours a week, we will take whatever,” which was enormously generous of them. I think was part of the upside of the pandemic is that a lot of employers were like, we’re just gonna have to figure out how to go forward with we’ll focus on a not 40-hour a week kind of thing. And I couldn’t even do 10 hours a week, like, I couldn’t focus enough to do some really basic stuff. 

So, because I didn’t have a job when people would ask me, and because I’m also like, fairly articulate. People would assume that I was doing better than I was. So, then when they would be like, “Well, you’re not really having any problems,” I’d be like I can’t unload the dishwasher. But I just want to be able to unload the dishwasher. Like yes, I’m not gonna go back to running half marathons or, you know, 10K’s. But I’d like to be able to walk around the park. You know, like, I had to learn how to make it really concrete. And it took a while to understand, I wasn’t going to the doctor to get them to care about me, I was going to the doctor for very specific purposes. You, gastroenterologist who is lovely, you need to help me with these esophageal things. I need to get this CT scan. I need to have a referral to ENT. You, ENT, I need you to help me get more baclofen because for me, and I know this is a difference between the axial spondylitis and the RA, like sleeping laying flat on your back is torture, it is the one thing I cannot do. I can go to yoga class and my back will feel better. And then, lay down in Shavasana, and you gotta get up and you’re like, in days of pain from that, right? So, you have to sleep every night. Like, you sleep till you get up. So, the baclofen, for me, helps me not wake up in pain multiple times a night, which then helps me live a life. 

But understanding who’s doing what and orchestrating that it is like orchestrating a circus. It’s a lot. Like, I project managed eight people during the pandemic while we had multiple natural disasters, we had riots in Philadelphia where people are, like, stuck in my house because stuffs on fire, and you’re still project managing all these people. And I was able to do all that. And I struggled to manage all these different people. And, you know, I think I’ve said in other places, like, just managing your meds as to what’s on 30, what’s on my 90, like, makes your head explode, you know. It’s a lot. And I think it’s, you’ve said it, it’s a job. It’s a job. You can learn it; you can figure it out. But it’s a hobby that I didn’t ask for. 

Cheryl:  41:55

And part of it, part of figuring it out is accepting that there’s parts of it that are unfigure-outable. Like, there’s this fun book by Marie Forleo who’s like a business coach person, is like everything is figure-outable, which I love as a concept. And like as a stubborn optimist. I’m like, I want everything to be figure-outable, but sometimes you’re gonna come against systemic barriers that are simply out of your control, like the price of your medication, you know, that kind of thing. 

Maggie:  42:22

But to answer your question about dealing with ambiguity, so I think some people think, “Oh, lawyer, you do law,” but there’s actually a variety of specialties in law. And there’s some people who do sort of all of it and God love them, hats off to you. You kind of specialized like doctors kind of specialize, right. So, if you go to an oncologist, they’re pretty good on whatever organ system that they work on. But they’re like, I don’t really know rheumatology, or, you know, they’re not going to give you heart meds, because they’re like, you gotta go to cardiology for that. I’m not a specialist. So, if someone comes to me, and they’re like, “I have this tax question.” I’m like, well, that’s a tricky one. Can I help you find a tax lawyer? Like, I don’t know. Often tax lawyers have additional degrees called an LLM. Same thing as like, patent attorneys, like, oh, I can’t even touch patent attorneys, because they have a whole separate bar exam they have to take. So yeah, oh, no. That’s why they get paid more. And they should, because their jobs are hard. 

So, for me, as a litigator, everything was ambiguous. Like, everything was ambiguous. We were working on usually two sides to the same set of facts, sometimes three or four. I started off in bankruptcy as a clerk to a bankruptcy judge doing corporate bankruptcy. So, if you had, let’s say, you had — one of the bankruptcy we had was the American banking financial institution. I think that ABMI, something in that. It was one of the folks that were doing this sort of in the crash, in the housing crash, they were securitizing loans and doing different mortgage loan lendings. It was super confusing. But you had the company, right? You had them. You had someone from the United States trustees office to make sure there was no sort of shenanigans going on and self-dealing. Then you had people who were representing all of the major creditors, right. So, you now have three people in court who may have three different things that they need to have happen. Then you can have bondholders. Then you can have customers. Then you can, like, it’s not just one set of facts. It’s variety of people. So, I think because of that my training was and this is sort of my ultimate interest, you know, when it comes to medicine, which is there’s a lot of different opportunities for narratives, you know. Like, I think we think there’s like one story, there’s one set of truth, and there isn’t, right. There just isn’t. 

I can tell you a story about a woman married to a, you know, Hollywood star. She’s always known for her red lipstick, gorgeous long, dark hair. Super gorgeous. But I can tell you a story about somebody who was an international human rights lawyer who the Secretary General tasked to ask to work on a specific issue. Those sound like two different people, who are the same person. They’re Amal Clooney, right? And that’s the thing about the rheumatoid arthritis is, which is, if you’re trying to put me in a bucket, I don’t go in a bucket. I have a variety of illnesses. And when I look at it, I look at, here’s the different symptoms, what do they fit in with? Because as a litigator, we’re looking for, what are all of the claims that can be brought, right. One set of facts you can have, you know, like, 16 different counts against you, right? Like, apparently, you can have 34 different counts, each one based on a document. And that’s the case against former President Trump. 

So, my ambiguity, I’m just sort of used to it, right. But my approach to things and my research approach to things is, like, what are the different facts? How can we rearrange them? And I would think that’s how medicine works, because they’re looking for this bucket, that bucket, that bucket, which are based mostly on what drugs will work, right. And that’s what they need to do for their circumstance and no judgment on them. But for me, it was difficult, because my analysis of what was going into it was like, no, let’s think about all the possible things that could happen, right. And I think that was the enormity of the frustration was how much research I was walking into a doctor’s appointment with and being able to say, like, I had the blood test for ankylosing spondylitis, because my dad had it. And so, it’s very inheritable. And the blood test that I had came back negative. So, okay, well, you don’t have ankylosing spondylitis. And that was like, I just feel like, maybe unsure about that. 

And I looked into it. And there’s an enormous amount of racial and ethnic diversity in whether that test is actually predictive. And I’m just say this out there, like, for Black Americans, just on a racial basis, like zero, like, they’re very low on testing positive for that. And they usually have a much worse set of symptoms. So, just I can start getting very angry about that, because I’m certain that there are people who have had these diseases for a long time, have not gotten any help. It’s probably especially Black women, just because they’re so often gaslit by the medical system. So, I just think it’s like, it’s some point I’m looking, I’m reading these medical journals that I barely can understand. And I can put together this system that’s like, actually, like, ethnically, that’s not true. My dad was Italian; I’m half Italian. So, Italians have a lower rate of positivity on ankylosing spondylitis, even though you can see it on X-rays. And like I’m walking in saying that. I’m walking in saying there is actually medication that can help with Sjögren’s. And this is what we need to do. And so, it’s just, it’s a fine line to walk because you don’t want to do the picky or the — 

Cheryl:  48:06

That’s the thing. Like, because people ask me, when I talk about advocacy, they’re always like, you know, well, isn’t my doctor gonna say, “Well, you just used Dr. Google,” or like, “I’m the expert, you’re undermining my authority.” And that’s just tricky. 

Maggie:  48:19

So, I happen to think anyone that’s like, “I have authority,” when they’re in a situation that’s not immediately life threatening, like, I’m concerned about that person, and whether they’re going to actually treat me properly in the long-term. Versus someone who’s like, “Man, that’s really interesting. I don’t think we’re there at your immediate treatment just yet. But let’s keep an eye on that. And we’ll move down the line with that,” right. Like, that’s a good point. I don’t think you need that harsh of an intervention, because there’s all these side effects. Let’s put that in our back pocket, and we’ll be able to move on. I think that threading the needle of, like, I want me to be very informed, and I can’t be pushy. I feel like it’s understanding that you’re going to go in front of someone, and you’re going to ask them to do something, and you have to pretend you don’t know all of it. First, my first appearance in court, the partner that I went with said, “You’re going to know all the answers to the questions that the judge is going to ask you,” it was actually Chancellor, the Vice Chancellor is going to ask you, “You have to pretend that what they’re asking you is a novel concept,” because you’ve prepared what are all the possible things I could ask, what are all the answers. And I literally had like tabs for like, if they ask this, there’s this, you know, case. And he’s like, “You have to pretend you don’t know. Because otherwise the judge is gonna get sort of feisty with you.” 

So, I think there’s a little bit of crossover between advocacy in the courtroom and advocacy with a doctor, which is I’m super prepared. I’m going to think of every question they’re gonna ask me. I sort of have an understanding of where I want to go with us. I want a referral to PT; I want to referral to pain management. What do I need for that? Who can I talk to who I already know? And, you know, I mean, I don’t want to tell people to go look at Dr. Google. But man, Reddit boards are fantastic in terms of people saying their actual symptoms in ways that you can understand. Lining all that up. And then, when you go see the doctor be like, what are the three things I need right now? Let’s go over my test results or my blood test results. Let’s talk about what medications needs to be tweaked. And then, what I need or, you know, whatever else it is. But like, that’s it. You’re not giving them a qualitative piece of information. It has to be quantitative, like, this is what’s happening based on my blood tests, let’s go forward this way. 

And it’s like, if you don’t know to do that, if you think you’re going to the doctor because they’re actually going to help you and make you feel better, that’s not the system that we have anymore. And that might have been true 20 or 30 years ago, but it really isn’t. And they only have 15 minutes for you. So, you have to pick and choose your battles. And you said that in the Rheum to THRIVE training, which was you need to find out how much time you have so that you can prepare.

Cheryl:  51:10

It’s so basic, but like they never tell you how long you have. They just tell you that your appointment starts at 11:20. Well, how long? Do I have 20 minutes? And how long do I actually have with the actual doctor? Like, not including the medical assistant? Not, you know, because sometimes they’ll say, “Oh, yeah, you have 20 minutes,” but they’re including the medical assistant coming and taking your blood pressure, all that stuff.

Maggie:  51:31

So, a special trick is if you show up early, and they actually can put you in a room and get started early, you sometimes get a little extra time. 

Cheryl:  51:39

Yeah, that’s very good. 

Maggie:  51:41

If something was — if somebody cancelled, if they’re running, you know, the doctor would rather like get in and get you done and get you moving so that they don’t end up running over. You know, by the end of the day, they’re an hour late versus, you know, that’s the other trick, which is if you have the ability, always schedule in the morning. Your nine o’clock, there’s only seven people ahead of you that can make you late versus three o’clock. It’s going to be, you know, 45 minutes. So, yeah, that was a special trick that I learned from a family member who’s a doctor. 

Cheryl:  52:13

Yeah. I mean, there’s so many follow up questions that I could have. But I want to acknowledge, I really loved your analogy earlier, and you’re always good with words, that it’s like managing your health. You didn’t say managing your health, but you were referring to managing health and you said it’s like orchestrating a circus. And that’s, I’m kind of as we go through these interviews, I’m typing sometimes, like, potential titles of the episode. I’m like, oh, it’s like orchestrate — that is, like, a way to depict like, the mental load, you know, the mental load and the logistics, and the unpredictability of the symptoms. I love that. And that also threading the needle of doctor interactions. I love that one, too. So, yeah.

Maggie:  52:54

Yeah. And it is the same thing. Like, you need to prepare for your doctor’s appointment in a way that you can be very focused and very — just as like if you’re going to thread a needle, you got to have quiet or whatever it is music or whatever you need. 

Cheryl:  53:11

Get your game face on.

Maggie:  53:13

Yeah, trying to be like, I’m just going to roll in and do my best. Like, that’s not going to work. Like, you do have to find —  you have to find a doctor that’s going to work with you. You know, if you’re prone to being like sarcastic and funny, and you’re with somebody who doesn’t think you’re funny at all, like, you’re going to be like, are they getting me? Are they hearing me, you know. So, yeah, which is, you know, if you have the opportunity to switch rheumatologist, it’s quite a luxury but, you know, most of us don’t anymore.

Cheryl:  53:41

Yes, I know. It’s like, there’s always best practices like find a good fit with a rheumatologist, you know, if you don’t like the first one, get a second opinion. It’s like, it’s just not feasible for everyone. But yeah, in an ideal world, these are good things to consider. I never even knew — I am such a rule follower that I never would have thought to switch doctors initially, do you know what I mean? Until I became more of a patient advocate. I was just like, this is the one I have, like, it’s like you go to school and they assign you a teacher, you don’t get to change, you know. So, you know, it’s good.

Maggie:  54:12

So, one thing that makes it easier for people if they’re moving to a new city, or if they’re getting in, someone told me, like, you have a referral to a rheumatologist. Make an appointment with a variety of people so that if the first one doesn’t work, you can then go to the second one or the third one. If the first one works, you can then cancel and those people will not be mad at all for you to cancel. But if it’s taking you six months to get into a rheumatologist and that rheumatologist doesn’t work, it’s going to be another six months to get into a different one, versus it’s six months to get into rheumatologist of Health System A. It’s probably the same amount of time or shorter for you get into B and C and D and whatever. And the other thing I learned was, you can, if people are like, “We don’t take your insurance,” you can say, “I’ll self-pay.” Self-paying isn’t as expensive as you may think. It may only be 200 or $300. Well, if you need a rheumatologist that isn’t making you feel gaslit, $200 to $300 sounds, you know, pretty good.

Cheryl:  55:13

And you have the right to request the super bill from them, which just literally — and I do this with my therapist, my psychiatrist. He is private pay only, but I get reimbursed 70%. So, I pay him $20 to $25, gets the credit card points, then submit — that’s two documents, it’s just two little PDFs with my receipt that I paid and the super bill, which literally is a tiny little docket that just says, “I gave therapy to her this day.” And I submit that just on an online portal to my insurance company, and then they literally deposit it into my bank account that 70% as an out-of-network rate. So, that’s another — we’re giving people lots of little on-the-ground tip.

Maggie:  55:53

Well, that’s how, I mean, that’s how I ended up, most of the things that have helped have been things I’ve learned from other people, whether that’s through Reddit, or Instagram, or on a support group, or whatever it is, you know. I kind of had to learn it wasn’t going to be like one magic pill that was gonna help. It was gonna be a thousand little things, right? Like, it’s just, one thing isn’t gonna make your life like, I don’t know, if you were in your 20s, you’d be like, “Once I do this thing, everything’s gonna be great.” And like, it’s not like that, right? It’s, “Oh, once I graduate from law school, that’s gonna be grand.” Like, listen, I wasn’t as poor as I was in law school. Like, I could afford chicken after law school, but like, it didn’t make me feel like super self-confident like I thought it was going to, you know? But I think that’s the same thing for, I mean, you could get in and you’re working on the meds and then it could take a while to get the right medication cocktail. And I think the things that helped me were, you know, like, the, whoever that poster was on the psoriatic board that was like, find what works. Birkenstocks, Hokas, whatever it is, just, you just got to figure it out, and then only wear that. And that’s my collection of Birkenstocks now, which is not necessarily my fashion choice but, you know, you do what you gotta do, 

Cheryl:  57:13

You gotta adapt. I’m a Hokas girl, for sure. But I like Birkenstocks, too, but it’s such a — I love that. It’s not one magic pill, it’s a thousand little things. And for some people, you know, I was actually flabbergasted when I reviewed research and found that, you know, 50% of patients who just have one diagnosis and that one diagnosis is rheumatoid arthritis, 50%, do go into remission on methotrexate alone. And I was shocked because, again, I, being active on social media, I’m not necessarily exposed to a representative sample of the average patient. If you just get this diagnosis and you go, and the first treatment you try is, you know, inexpensive. And the majority of people do tolerate methotrexate fine. Like, there are definitely some that have really bad side effects, so bad that they have to stop it, but the majority don’t, according to the latest research I’m aware of. So, they are not having to do a lot of management. This is just, they just take medicine, but for a lot of people it’s more complicated. Or maybe methotrexate works for five years and then it’s not enough anymore then you got to add a biologic and then your body changes, you know. 

Maggie:  58:17

Well, and that’s true for axial spondylosis, too. There are people who just take, like, I don’t know, they take one of the COX-1 or COX-2 inhibitors and they go on their merry life. Like, they’re okay. They just take this sort of beefed-up anti-inflammatory. But I, like, that made me violently ill, like I was just in so much pain from my stomach, because I can’t — and I said to my rheumatologist, like, I can’t take it. I can barely even take Advil, how are we going to take any of these other things? Meloxicam is what I’m trying to think of. So, I can’t take Meloxicam regularly. But if something really gnarly happened with my back, I can take one, you know, or that sort of thing, so but some people just take Meloxicam and then go on with your life and they’re so happy and it works great for them. And God bless them. That’s not me.

Cheryl:  59:06

They’re probably not the ones listening to the podcast.

Maggie:  59:09

Yeah, like, that’s the thing too, which is like, if you got one drug and you went on your life and you saw your rheumatologist every three months, you’re not going to be looking for, like, help me, someone please help me.

Cheryl:  59:20

Yeah. And that was I often do say, like, that was me when I was on methotrexate plus Enbrel the first six years. I actually found an old blog, I’d forgotten I had a blog on, like, it was either like Blogger or Blogspot. And I was like, oh, I wonder if I wrote anything about having arthritis. I didn’t write anything and I don’t think it was because I was like afraid of a stigma or anything. It was just like literally just not a huge part of my life at that time, so that is good to remember. But back to the group of people who are, you know, having more of a, you know, let’s just say like there’s an old Japanese curse my friend Paul likes to refer to, there’s an old Japanese curse, “May you live an interesting life.”  You have an interesting health journey. So, I would love to before we get to the rapid-fire, I would love to just hear a little more — you know, I honestly don’t know the answer to this — what made you want to join the Rheum to THRIVE educational support group, as I call it? And how has that community helped you?

Maggie:  1:00:21

I think I had figured out the arthritis, the inflammatory arthritis, because I quizzed my mom about my dad’s stuff. And that led me down, is it psoriatic arthritis? Or is it, you know, ankylosing, and sort of where that was going. And I think that you did a webinar on stress. And you said in it, you know, cognitive behavioral therapy, like, let’s reframe this, let’s think about this in a positive way. Like, it doesn’t work if you have an active disease process. It’s Acceptance and Commitment Therapy, which is like, this is happening, what do I need to do to work on it? And that’s like, you would think, as a relatively smart person who reads a lot, like, you would think that I would have, like, gotten that, like, owned it in my brain. And I 100% did it. And it was like a glow stick moment where you break a glow stick and the chemicals combine, and they change and they light something up and they’re never the same again. You can’t put them back into their bits again. 


And I remember thinking that like, oh, this makes so much sense. And I need to go to a specific community to ask the specific people. Like, having someone tell me like, you know, the pain that you’re experiencing is because you’re stressed about pain. I’m like, that’s probably true. That’s probably true. I get stressed because I can’t work because I can’t sit in a chair. Like, that is probably adding to my pain. But like, it’s not pain related to a specific injury. It’s not, you know, how the neurology created it. So, I think, for me, when I got to that point, I was like, okay, I need to go find sort of my tribe of people who can answer what I need. And I looked at what the components of the Rheum to THRIVE program was, and it made me realize, like, oh, this is going to make the, what I called my DIY-RN process, like, do-it-yourself registered nurse, that you have to do to be able to advocate for yourself? I was like, this is gonna speed that up and make that a lot less stressful. And, like, it really did. I think, also, there’s a self-pacing aspect to it, which for me, having really like the fatigue was really gnarly. Like, there was no way I was going to be able to do something that wasn’t like I can get to this, I can’t get to this kind of a thing. So, yeah, I think that’s why I dug into that.

Cheryl:  1:02:46

Well, I can, actually, I’m really glad that you mentioned the stress management webinar, that was just a free webinar I did in the Fall of 2023. But it was exactly, we were talking about saying, you know, what are the chronic illness specific stress management tools. And why do these traditional kind of general stress management tools like CBT reframing, where, like, is this a distortion? Am I catastrophizing? Like, the question of ‘Are you catastrophizing your pain?’ is unanswerable when you have a chronic ongoing illness. Like, this, it literally does take years off of your life. People who have rheumatoid arthritis have, like, if it’s uncontrolled, have like a seven-year reduction in lifespan. So, are you telling me that, like, that’s catastrophizing? That is actually a life-or-death issue in the sense that it’s, you know, deeply affecting my life. 

So, how do you, like you beautifully said, you know, acknowledge that, yeah, stress does cause suffering, or can, you know, the stress that you have is very valid, and it can, it can exacerbate existing, you know, pain and fatigue. But how do you wrap your head around the actual reality of like the unknowing, the lack of certainty or uncertainty? So, that’s what, for me, you said that, you know, you hadn’t got it through your, quote unquote, like, ‘your thick head’ or whatnot. I mean, I had weeks of therapy one-on-one before I could wrap my head around Acceptance and Commitment Therapy. So, I’m actually always pleasantly surprised when someone can, like, kind of have that glow stick lightbulb moment just in the course of like a workshop

Maggie:  1:04:21

Well, and I think it’s a bigger thing, too, because I feel like the sort of popular psychology is very much like, you know, it’s not even the positive thinking, the toxic positivity, but the popular psychology is like, “Well, this is how you react to things and this is how you live your life in this way.” And it’s not helpful. It is not helpful to say to someone who has, you know, a significant impairment in their daily life like, “Well, you know, look on the bright side.” Like, people, tell me what the bright side is about not being able to lay down flat to sleep, you know? And I can tell you different parts of my life that I can use this experience to grow in ways that I’ve already articulated that I want to grow. And I can use it, like, you know, free compost or something. But I don’t think that, like, it’s sort of you have to figure out, it’s sort of like you went to a different college than your friends who stayed in your town and like, now your experience is different. Those people may not be able to really help you in your professional career in the same way, and you kind of pick and choose what you say. 

But I can’t remember if I said this to my therapist, or my therapist said it to me. He thinks I said it, but it may have been him. But I said, you know, “If you’re cold, you don’t learn to shiver better, you learn to put on socks.” And I think that’s the thing is that popular psychology is like, let’s talk about resilience. And like, yeah, I mean, the resilience, and let’s talk about it, but don’t learn to suffer more. And I think when you have a chronic illness, you think you’re winning, or you’re whatever, when you’re like suffering through it, or pushing through it. And that’s not — all that’s going to do is take all the joy out of your life. Instead, if you’ve learned, like, look, I could suffer through like, super painful shoes. And I would love to because I’d love, you know, everything fashion. But I could also just be like, all right, well, if I’m stuck in Birkenstocks, I’m going to make them like silver and rose gold, and, you know, what ones have flowers on them and just find a way to make them feel like myself, you know?

And I think that’s sort of the key to like staying with the folks who sort of speak your language in that way in terms of the pain, which is like, who can help me find socks, you know? Like, who’s going to help me get that? Versus who’s going to think — and not from a negative place — but who’s going to think that they’re helping, by trying to teach me how to shiver? Like, it’s not, I’m not creating the problem myself, it’s already there. And I need to figure out how to do it.

Cheryl:  1:07:06

That’s, that’s a really fascinating analogy. Like, I feel like part of it makes sense. The other part of me is like, there’s also moments where, or at least I’m trying to apply it to ACT, Acceptance and Commitment Therapy, where we say, like, sometimes you put on the socks, and you’re still shivering, and like, there isn’t a solving, it’s not a solvable problem. And so, how do we learn how to cope with that, and not just in a way of like gaslight ourselves into thinking it’s great to shiver, but just say, like, okay, this is painful. Suffering is part of life. And then, what can I do within the confines —? I’ve done, I’ve tried my solving tools, and I’ve reached the maximum amount of solving I can do on this problem. And then, can I still have a meaningful life, a thriving existence, however you choose to define that, with the pain, with the suffering, that’s a remaining given that there’s nothing more to be done, you know. And that’s so hard to do on your own. I find it a lot easier to do in community, you know, with others. 

Maggie:  1:08:12

Well, and also, you might hear someone say to you, like, “Look, if you’re really cold, maybe that’s not the room for you. Maybe there’s a different place to be,” you know, and that might not be something that you would even thought of as a solution, you know?

Cheryl:  1:08:28

That’s really, really true. You turn the temperature up.

Maggie:  1:08:32

But you might not know that that’s an option until you’re with somebody who has more experience or just a different life view. Like, that’s why it’s, I think, personally, one of the nice things — I mean, I’ve only been here for you know, two weeks, but like living in a place that has more either racial diversity, religious diversity, or whatever it is, people with a different perspective on life than you are going to handle situations differently and then may be able to offer solutions to you that you wouldn’t come up with, which is why it’s really nice to be outside of your bubble. Because your bubble can only offer so much. And when you have something that is life altering like a rheumatic issue. Like, you need to, every single issue — would you ever be in a situation at work where you’re like, okay, this is really bad. We’re in the, like, no bad ideas phase, right? How are we gonna get out of this? No bad ideas. And I feel like — oh, can we press pause real quick? 

Cheryl:  1:09:28

Yeah, yeah.

Maggie:  1:09:36

I have no idea what I was saying. 

Cheryl:  1:09:37

You were saying something smart and then we got interrupted. This is a real moment of brain fog and we’re going to accept it with our Acceptance and Commitment Therapy. And understand that we may never recover that thought.

Maggie:  1:09:48

Who knows, just on the brain fog for one quick minute. I don’t know what you do. But when I do have a thought, and I know brain fog is happening, man, do I email that to myself as fast as possible. My phone is always on me. I have a billion emails that I send myself. I once accidentally sent my sister something. She was like, why do I care about dog vets in Nashville? And I was like, oh, that’s for me. Sorry.

Cheryl:  1:10:09

No, that’s why in the middle of this recording, I literally added something to talk to my rheumatologist about to my little notes. Because, yeah, it’s we have to write things down. That’s what we call in OT, occupational therapy, we call it a compensatory strategy. So, if you’re not able to fix or solve your problem of brain fog, you can compensate by having external supports, like same with ADHD, you know, reminders on the phone, stuff like that. Oh, one thing I wanted to say, because I put this in the show notes already, is you mentioned — way earlier, sorry, just adding this in before we go to the rapid-fire questions. But you mentioned that people, you know, Black women especially have been often like under-diagnosed with many rheumatic diseases. I remember, actually — oh, yeah, go on. 

Maggie:  1:10:58

So, I think my point was Black women in general are under-diagnosed with every illness. Rheumatic is probably part of that, too. I don’t have any support for that particular standpoint. I just know when it comes to pain and people believing pain, people in general, medical practitioners, women and men, and people of all varieties of gender disbelieve women’s expression of pain. It’s not like you go to women doctor, the woman’s reaction gets believed more. It’s a major issue in medical malpractices. They’re just not listening to people’s pain, but it’s significantly bigger in different races than white. And I think the worst is Black women. It could be there’s a breakdown and other races and ethnicities too, that I just don’t know about. I can do little more research on that and get back to you.

Cheryl:  1:11:52

Well, and one really positive example of, you know, change on a systemic level is that this was recognized as an issue in the American College of Rheumatology. Specifically, they tackled it in 2021 with the lack of representation of skin, skin of color, meaning if you look at the textbooks, one of the classic symptoms of rheumatoid arthritis, well, what will it say? Red, swollen joints, right? Well, if you are white as a sheet like I am, because I am like, my ethnicity is all Irish and British. There is no other thing in there. My brother and sister have bright red hair, you know. So, it’s, yeah, to me, on my skin, it’s red. But if you have black skin, dark brown skin, it is not going to look red. So, they started this skin of color kind of initiative where they added to their American College of Rheumatology image library for specifically skin conditions like psoriasis and psoriatic arthritis, but it’s a start, you know? 

Maggie:  1:12:57

That’s really super interesting because granuloma annulare, which is a rash that has like a, it looks like a burn, and that kind of grows out. You see it on me because it’s red, it’s bright red, it looks odd. It looks like I have some sort of, you know, burn or something. And then, it comes and goes with prednisone; I know it’s inflammatory. And it’s very common for that to start right before Sjögren’s starts. So, I would think the ability to perceive the difference if you have more, I’m gonna say this so wrong, and you’re going to edit this later — it’s melanesian in your skin? 

Cheryl:  1:13:34

Yeah, melanin.

Maggie:  1:13:36

Melanin. Okay, sorry, sorry. If you’re more, if you have more melanin in your skin, you might not have the difference in contrast between the red of the granuloma annulare and the color of your skin. So, yeah, I mean, look, this is not — I’m a white woman, this is not my issue to sell. But just trying to be aware of the fact that, you know, this is a problem in the healthcare system that, you know, we all kind of need to —

Cheryl:  1:13:59

Yeah, and I mean, like, the first, you know, the low hanging fruit, so to speak, would be things that are extremely visible, like your skin. And having representation of skin of color in the textbooks, in the diagnostic supports that physicians have, but then that’s much deeper and much more difficult but more extremely important to get to that. What about those mental, psychological and stereotypes that people have about pain tolerance, and pain, women’s pain and pain in people of color, you know, non-white individuals, you know. How are we going to tackle that? I don’t know, but it needs to happen, you know? 

Maggie:  1:14:43

Well, I think there’s also a lot of gender and work related in rheumatoid diseases as well because it used to be, “Oh, no. No women get ankylosing spondylitis.” Well, that’s because work was physical. So, men who couldn’t work would then go to the doctor, right. And rheumatoid is generally your periphery, it’s generally your hands and your feet, and women’s work was with their hands. So, you know, there probably had been men with rheumatoid arthritis since the dawn of time, that because their work, and I’m not, I’m using air quotes, like, their work was much bigger, more physical. But if a woman can’t take care for a baby or hold a baby, they need to wash, cook, you know, that kind of thing, they have to go to the doctor. Whereas if a man can’t do stuff with their hands, maybe not as much doctor-ish, you know? 

And I think how we work and how we think about what illness is, because I spend a lot of time thinking about what is illness, what is wellness, not related to work? You are ill when you can’t work. Like, can I not be a human being who’s ill, and I can still work, or never was working, or work in a different capacity? And I think that that the focus that we have on defining illnesses that’s based on productivity when it comes to work, it’s very industrial revolution, like everyone’s supposed to be robot working for the exact same amount of time in the exact same way every single day. When you only, you only sort of fall into the lump of illness such that you can get medical attention, when you can’t work, you can’t do this, you can’t do your other thing. And I think that’s why you find that, like, more women are being diagnosed with axial spondylitis now, more men are being diagnosed with rheumatoid arthritis. You know, I don’t know what the breakdown is for psoriatic arthritis. I think that’s really hard to get diagnosed with, as I understand it, like, just really.

Cheryl:  1:16:47

Yeah, I think there’s a genetic component to some of these where they might be more likely to affect, you know, overall, women are more likely to have any sort of autoimmune issue and scientists are still trying to figure it out. But you’re so right, that should be a whole other episode title of like, about a whole episode topic of work and productivity, and how your worth is not defined by your productivity and all that. 

Maggie:  1:17:18

And I think also women talk to women about their health issues. So, women will talk to other women who will then say, “You know, my grandma had that and she had rheumatoid,” like, how I got into the vestibular migraine was that two women asked me, like, “Do you have Ménière’s?” And I was like, I don’t know what that is. And my differential diagnosis for many years is vestibular migraines. And I was like, I haven’t had a migraine in three months. That’s really weird. That’s not right. Let me start tracking this. So, but if you’re not in a health conversation with people that are different — I’m saying women and men, but I also mean, you know, gender non-binary people, and gender fluid people. 

But if you’re not, if you’re not having conversations about health with people of different genders, you’re not going to think that you, you’re not going to walk into that. You’re not going to think, oh, axial spondylitis, because the women in your world are only talking about, you know, rheumatoid or psoriatic. So, I think that underlies some also of how people get diagnosed. Because I feel like in today’s day and age, which is caused by the insurance companies, not by the doctors, but we have so little information and so little access to people that we’re having to share stories again, and we’re into that, like, “Hey, this is my symptom. That’s your symptom. This is what’s happening. I went to this doctor, you went to that doctor,” and it’s incredibly important to be sharing your stories.

Cheryl:  1:18:38

Yeah, I think that’s, yeah, that’s why, you know, people are like, “Oh, get off social media. It’s toxic,” and everything. I’m like, I can’t get off social media as a health care patient. It’s too important. Like, yeah, absolutely, it can be there are parts of it that are like a cesspool and unhelpful, but overall, it’s such a crucial tool. It’s like I say that social media is like a giant waiting room, you know, like, you’re waiting for the rheumatologist to chit chat and, you know, it’s the same. So, well, we do have to, just timewise, and I’m first of all, I’m so grateful that you’re able to record this in the middle of your move, or right on the heels of your move in progress. What are your best words of wisdom, or anything you want to share to somebody newly diagnosed?

Maggie:  1:19:22

I don’t — I don’t know. Because I’m still in that kind of newly diagnosed. I think some of it is to sort of no matter how hard you’re trying, like, it’s not a slow process because you’re not trying hard enough, I think is what I would say. Like, I’ll just repeat it because I kind of switched in the middle. Like, it’s not going slowly because of something you’re doing. It’s going slowly. Like, I kept thinking, if I work harder, do something different, read more, and like, you know, that it would go faster and it just doesn’t. It just wipes out the time that it wipes out. 

Cheryl:  1:19:59

I oftentimes tell myself that’s not hard because you’re doing it wrong. It’s hard because it’s hard. You know, it just is. And so, that’s very congruent with that. Do you have a favorite arthritis gadget or tool in your toolbox, physical or metaphorical?

Maggie:  1:20:12

You know, I was actually thinking about this, because you mentioned that. And I’m always like, my heating pads. And I have a specific eating bad that I like. And I have three of them and one travels with me when I have to go places. I was like, you know, I do love my heating pads. And you have to get the flexible kind that turns off, because otherwise you can burn yourself or hurt yourself. And I’ll send you a link to the one that I use the most from Amazon, because it’s really cheap. It’s like 15 bucks or something. And I do have three of them. One in the bedroom, one in the office, one in the living room. And I unplug and move them around with me. And I have to shoo the cats off of them. But they are mine. 

But you know what the other one is? I mean, you mentioned social media. And I think that’s really helpful. The other thing I’ve learned is podcasts and books on tape. Because if you’re in a place where, like, you can’t really concentrate, a book on tape is great. You can, like, if I have a really bad migraine, I can’t see anything. So, I can’t really watch television. But I can listen to a really, I can listen to a bunch of — I call them my nerdy Supreme Court podcast. But I listen to a couple of different nerdy Supreme Court podcasts. And that’s engaging enough if I have to lay down and put something over my face. Like, that’s making me not feel like I’m just in the pain cave, you know. So, podcasts and books on tape. And books on tape, you can get through Libby, which a lot of people if they have a library card, you can get audiobooks. You can like check out an audiobook. So, it can even be podcasts are usually pretty free. 

And I do think like there was a knitting podcast by Andrea Mowry that I had been listening to because she’s, it’s lovely, and it’s thoughtful, and it’s engaging. And she’s very, like, she’s just a very positive person. And so, in the midst of like, I don’t feel good, I’m moving, I’m stressed out, I’d be like, just gonna put on a little happiness for 30 minutes. And then I’m done. And like, if you can’t change your thoughts, maybe you can sort of bombard yourself with somebody else’s thoughts for just a brief moment. So, it’s a weird hack, but it is, like, you know, I do love the audiobooks and the podcasts and the, you know, all that kind of stuff.

Cheryl:  1:22:24

I love that we’re in the generation where we still call it books on tape. I remember checking out from the library. I read ‘The Endurance’, the Ernest Shackleton story of, you know, being stranded in Antarctica. I listened to that on CD. So, I had this big stack of CDs, and I had my little discman. And I would walk around listening with my headphones.

Maggie:  1:22:43

That’s right. It’s Audible. They’re Audible books.

Cheryl:  1:22:46

It’s fine. Yeah, audiobooks is perfect. On the same kind of note, do you have a favorite book or movie or show you’ve been watching recently?

Maggie:  1:22:55

I love to watch different design shows. And there’s one that I’ve been watching called ‘Happy to be Home’. Oh, I think it’s one of the Magnolia Network, one of the Chip and Joanna Gaines folks. And it’s just, it’s very colorful, very colorful. I mean, really high contrast. And I like it. There’s another one with a muralist and a graffiti artist, and they just did lovely things. And they’re like the British baking shows where you feel positive and good about life afterwards. It’s like that, those kinds of shows but with color. And I, you know, I love all the the British baking shows too. 


And I have a Book of the Month subscription. And you can also get audibles to that. I have yet to get a dud from Book of the Month. Every single one of them — one of them I was, like, they could have been edited it better. Four stars. Everything else has been five stars. Every book I’ve gotten from them has been out of sight. I get hard copies of books, because then you can donate them. And they keep doing good as you go along. But, you know, there’s lots of good reasons to get them. And they did start an Audible program. So, Book of the Month is like 20 bucks a month. 

Cheryl:  1:24:07

Nice. That’s awesome. I used to do that. 

Maggie:  1:24:10

It’s lots of books. 

Cheryl:  1:24:10

Yeah, that’s great. Two more Do you have a favorite mantra or inspirational saying?

Maggie:  1:24:17

I think there are two. One I got from Reddit that I cannot figure out where this person said it. But they said that they tell themselves, “Do less more often.” It really helped. It really helped me be like, that’s the plan. I think the other one I have that I learned it a long time ago, I think when I was like, you know, in 2005 and all the money caught on fire, it was not a good time to be a corporate attorney. And things were a little rough. And I think I read something in like a catalog that said, “Everything will be okay in the end. If it’s not okay, it’s not the end.” 

Cheryl:  1:24:55

Yeah, yeah. I love that one. I love that one. Last one, what does it mean for you to live a good life and thrive with chronic illness?

Maggie:  1:25:07

It’s a tough one, right. Like, how do you, like, that’s the elevator pitch problem, right? Like, how do I describe what my health issues are to you in 15 seconds, right? Like, how do I know what a good life for myself is, especially having gone from, like, literally billing, you know, tens of hours, to think about productivity, or think about how am I influencing the world to move it forward in a good direction? And at the end of the day, it comes down to that amorphous, like, enjoying. Am I enjoying my life? And that’s the, like, get the fancy tea, you know? Like, yeah, sure, you can get the $2 tea, but like, go get the $9 tea, because that’s gonna make your life a little nicer. 


And I think it’s really, you know, prioritizing people, prioritizing enjoyment. Like, getting it where it’s at. I think, when I used to run, there was a runner who said, you know, when you’re coming back from an injury, don’t go back to what you were doing. If you’re a distance runner, or speed runner, go do something different. And I think, figuring out how to live with, you know, chronic illness is like, don’t try to go back to your old life. Because you’re just gonna compare. So, and that’s one of the reasons I don’t try to practice law anymore. A) because I’m just unreliable as a human. Like, I never know what’s going to happen. And I know there’s other people who can do whatever they want to do, but like, I’m a, you know, red hot mess of autoimmune stuff. So, you know, what do I do that works and helps and what does work look like? What does life look like? Am I just the person who gives you lots of good book recommendations? That’s still a decent life.

Cheryl:  1:26:46

You are amazing at that.

Maggie:  1:26:47

I just read a lot of books.

Cheryl:  1:26:51

And no, and I think I definitely know I’m asking like a basically impossible question to answer. You know, what does it mean to thrive with rheumatic disease? And I think my answer changes everyday, too. So, I do love your idea of joint enjoying life. I do have my Leslie Knope, “Treat yo’ self!” She’s like my kind of hero. I was joking the other day, but we need to have, like, Leslie Knope is the main character of Parks and Recreation if you don’t know, it’s an amazing show. But she’s very, very, very passionate and very productive and loves people a lot. And but yeah, she — actually it wasn’t her, it was Donna’s, but anyway.

Maggie:  1:27:32

I think the term for what I’m trying to say is like savor. Like, when you’re in an experience, really like talking to yourself about how great the experience is. If we went, you know, I used to run with my husband used to run a lot, with my husband like 10 miles. And today, we just went for a really nice, like, in between a walk and a hike. All the whole time I was like, look how great these ferns are. And that dog is really beautiful. And, you know, this is so, the weather’s incredible, it was really nice out. And, you know, then we went and had a really nice little breakfast where I had a super great little breakfast scramble. And like just really, when you’re having something that’s enjoyable, being like, wow, this poblano pepper was smoked perfectly. And I love how they put the sour cream on this. And just really highlighting what’s happening as it’s happening, you know, and really just sinking into that so that you can, your brain is set up to think about the negative to protect you. But like really making it a practice to dig into the positive.

Cheryl:  1:28:34

I love what — it really sounds like the essence of mindfulness, which is like, you know, awareness and presence in being present in the present moment, which is hard to do 

Maggie:  1:28:44

It’s a little different, because mindfulness asks you to sort of step out of something that’s happening and think about how you’re experiencing it, like being mindful. Being embodied is feeling it, and really allowing yourself to feel it and allowing yourself to lean into the feeling of it. So, it’s a similar related concept. And I think being embodied can help you then be more mindful. But we don’t have to always think about how we’re feeling. Sometimes you just feel and I think that’s the key. 

Cheryl:  1:29:13

Yeah, yeah, I once — I’m still taking this around in my head, and then we’ll wrap up, but there’s a Tik Tok video with a psychologist and he said, “The opposite of anxiety isn’t peaceful, isn’t feeling peaceful. It’s feeling, it’s being present.” And I was like, whoa, that is — you know, my anxiety it always about the future. So, when I’m present, it’s actually truly present. I’m not worrying about the future, you know, anyway, so that’s how I apply it to me. But I love that concept. If you can’t run, enjoy the walk, this kind of example with your husband. That’s beautiful. Well, and I’ll put links to everything we talked about in the show notes and you can find Maggie on Ms Maggie — @Ms.Maggie.Makes on Instagram. I love that. And just thank you so, so much for taking the time. 

Maggie:  1:30:02

And Substack. 

Cheryl:  1:30:03

And Substack, yes.

Maggie:  1:30:04

And Substack.

Cheryl:  1:30:05

Maggierussell.substack.com

Maggie:  1:30:07

Yes. I write about illness and faith and birds and a whole thing on Tim Gunn. But that’s for another day.

Cheryl:  1:30:16

Project Runway? Okay. Okay. Oh, I gotta read that one. I’m behind. Well, thank you so much. And we’ll talk to you later! Bye-bye for now.

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