“It’s a Moving Target:” How to Cope with Rheumatoid Arthritis Ups and Downs, with Emily Jacobs

Summary:

In this episode, Emily and Cheryl discuss how they’ve come to terms with the fluctuating, non-linear, dynamic nature of rheumatoid arthritis. 

After being a fierce athlete and playing Division 1 water polo, Emily was diagnosed with rheumatoid arthritis at age 22.  She shares lessons learned while working as a night shift nurse for 12 years and having three children.  

Emily & Cheryl discuss ways to cope with the ups and downs of chronic illness, especially during times of uncertainty or when it seems the disease is posing “moving targets.” Emily shares what helps her thrive despite obstacles, including: having a supportive community, learning tips & tricks, and using products for accessibility. 

Video of Interview

Episode at a glance:

• Emily’s diagnosis story: second opinions, new/fluctuating symptoms, uncertainty
• Emily’s treatment journey: methotrexate, steroids, medical cannabis
• Pregnancy and postpartum journey with RA: how RA has impacted functional/lifestyle tasks with parenting
• Work life: Emily shares what it was like working as an ER nurse while managing RA 
• Coping with “hard seasons”/flares: having community, validation, knowing “it’s not in my head,” connecting with other patients in the Rheum to THRIVE group; learning tips / tricks / products; accessibility
• What Emily wishes she knew when first diagnosed: autoimmune journey is not linear/is like a moving target; wondering “is this a temporary flare up, or is this long-term”; setting treatment goals – “I want to not be distractingly aware of my RA/health” 
• Coping: through a supportive community who “gets it”, learning tips and tricks for creating a rheumatoid arthritis “toolbox”, and addressing the mental health impact that isn’t often talked about

Medical disclaimer: 

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

Episode Sponsors

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in 2023!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Speaker Bios:

Emily Jacobs:

I’m a nurse, grad student, Mom, and wife and I was diagnosed with RA in my early 20s. I’m 40 now and it’s been a lot of ups and downs. It’s a daily effort to manage this disease and I seem to be at yet another crossroads where I have to factor it into decisions for my life and that is a hard thing to accept.  

Cheryl Crow

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

Episode links:

• Links to things mentioned in episode or additional listening
  • Medical Cannabis and Arthritis 101 with Registered Dietitian Cristina Montoya
  • Americans for Safe Access – to cannabis
  • How Does RA Affect Life Expectancy?
  • Compression Gloves
• Speaker links
  • Epkjacobs on Instagram 
• Cheryl’s Arthritis Life Pages:

• Arthritis Life website 
• Youtube channel
• Instagram @arthritis_life_cheryl 
• TikTok @arthritislife
• Arthritis Life Facebook Page
• Cheryl on Twitter: @realcc 
• Arthritis Life Podcast Facebook Group

Full Episode Transcript:

Cheryl:  

I’m so happy to have Emily Jacobs on The Arthritis Life podcast today. Welcome!

Emily:  

Thank you. I’m so happy to be here.

Cheryl:

Yay! Can you give everyone just a quick intro to you, like where you live, and what is your relationship to arthritis?

Emily:  

Sure. So, I’m Emily Jacobs. I live in Maryland, in Southern Maryland, which is an important distinction because we’re south of where most people think we are. Maryland has this weird mantle that comes down. 

Cheryl:

Oh, okay.

Emily:

Yeah. So, like, I tell people, I used to live in Northern Virginia. And then I moved south to Maryland, which is like —

Cheryl:  

Oh, that is confusing, yeah. 

Emily:  

Yeah, but I did. So, yeah, but about 30 miles outside of DC. So, that’s the nice part. I have access to a lot of resources here. A little bit about me is I’ve been an ER nurse for about 12 years, mostly working — well, only really working night shift. I have three kids. Their ages are ten, eight, and four; three girls. I’m married. And I’ve been dealing with rheumatoid arthritis since — I was trying to look back at this — I think I was formally diagnosed when I was around 20 to 23. So, I think we say 2005 just to keep it easy. And I think, like with a lot of people, it was a, it took me a little while to get really, to really accept that diagnosis. And well, it took me a really long time to accept it, but to even just believe that that’s what it was. I saw a lot of different rheumatologist in the first, like, year or two, just trying to get additional opinions. And they all drilled it in. They all thought it was the same thing. So, that was on one hand, nice. But yeah, sorry. I’ve been dealing with rheumatoid arthritis for almost 20 years. Not quite. And it’s been up and down, to say the least.

Cheryl:  

Had you already gotten your nursing degree at that time?

Emily:  

No. No, no. I was, yeah, I was fresh out of college, actually.

Cheryl:  

Okay. Okay. We were really similar. 

Emily:

We’re really similar, yeah.

Cheryl:

I’m like just like a year behind you chronologically, but yeah. 

Emily:  

Yeah, like that. I think that was one of the things that drew me to your podcast and like, once I started hearing your story, because it was like, oh, this is nice. Someone who’s around my age talking about RA, that’s exciting. And then it was, oh, wait, we have very similar kind of landmarks in our story. Yeah. So, I had just graduated from college. I moved to DC. I was like living, you know, the single young lady life with my girlfriend’s, roommates, like everything was great. I had played division one water polo in college. So, I had been this, like, I’ve been an athlete my whole life. I was really strong. I was, I mean, fit, sort of. But you know, I’d always been an athlete.

Cheryl:  

Water polo is not a sport you can skate by on without being fit.

Emily:  

Yeah. I mean, yeah, right. Like, I, you know, weightlifting. I did all that stuff. And I actually was still playing water polo when I moved to DC. There were some adult teams, like master’s teams down here. I was playing on two different teams. And that’s where I started having real symptoms that I was like, what’s going on? I can’t — that’s a weird pain. And I had plenty of shoulder issues in my years of sports and stuff like that. So, I knew a little bit. But this was a different pain. And also, just like a different functionality. Like, the stiffness was there. And I was like —

Cheryl:  

Yeah, it does feel quite different than like a muscle soreness that you get from over exertion and stuff like that.

Emily:  

Totally. Yeah, exactly. And I couldn’t identify it. Like, it was weird, because I was like, I know my body. Like, I know these kinds of things. And not being a medical person, just being someone who had gotten enough injuries and stuff like that. And so, that was what made me — it was that and it was I had swelling in my knees bilaterally, that was that. So, when I went into my first rheumatology appointment, actually, I did have one doctor telling me that she didn’t think it was anything. But when I went in to a rheumatologist, just, I mean, everyone was like, this is textbook RA. Like, you’re the spitting image of the textbook, of the descriptions, and all of that. So, I’ve never had positive bloodwork. I’ve always been — I mean, I’ve had elevated numbers with things like CRP, of course, and I’ve had some elevated things, but I’ve never had a positive Rh-factor or, you know, that kind of stuff. But I’d just been such a textbook symptoms that every doctor was like, “This is RA.” 

Cheryl:  

So, okay, so after you got all the second opinions, like when did it sink in? And what did that feel like when you kind of had to accept that you really have it?

Emily:  

Okay, so I, in hindsight, I feel like this sounds a little bit crazy, but this is the honest truth, okay.

Cheryl:  

This is what we’re here for. Honest arthritis truth. Arthritis life truth.

Emily:  

Well, sometimes I’m like, what was I —? What? Well, so.

Cheryl:  

Know better, do better. Yeah.

Emily: 

Right. Yeah. 

Cheryl:

Hindsight is always 20/20.

Emily:

Yeah. Exactly, right. Yeah. So, my symptoms would appear for the first several years only in the summer. I don’t know if that has to do with humidity and barometric pressure in DC. I’ve had some people say that to me. I don’t know, you know, who’s ever going to know? But I would only have symptoms for like, late May until August timeframe. And I, for a while, could manage those with Advil, Tylenol, Aleve, just alternating so that I didn’t get too toxic, but I would take those things. And particularly because none of the rheumatologist wanted to put me on any hardcore medicines because I was so young. So, they were kind of like, “Well, if you can just deal with it, just deal with it.” And of course, I was an athlete. You’re talking to an athlete. I can deal with it. I can deal with anything,

Cheryl:  

But just so people know that you’re listening now in 2022, the current recommendation is 100% — the current recommendation is opposite of that, is early aggressive treatment. But so, it’s changed a lot in even just 20 years. But for some weird reason, my rheumatologist was, she was following the recommendation that they’re doing now back then. I think that was maybe just luck of the draw. And that’s what can drive people nuts is that there’s a lot of variability between professionals and that’s just the nature of healthcare, right? Like, you know as an ER nurse probably way more than I do, but the point is that she put me on methotrexate and Enbrel right away. And — I know. That doesn’t even— it’s unheard of now to even get approved for a biologic that quickly because —

Emily:

I was just gonna say, you got on biologics —

Cheryl:

Sorry, I think I do — I always say right away. I think I was on methotrexate by itself, and prednisone for like three months. And then, when it was still like, I guess all my markers were just so off. 

Emily:

I was just gonna say, it must have been really severe, too. Yeah.

Cheryl:

And I had rheumatoid cachexia like, which is like severe muscle wasting. Like, I had gone 130 pounds to 105. Like, and I had of course been accused of having an eating disorder and all this stuff before. And I say accused because I didn’t. I wanted to eat. I wanted to, you know, be strong and bigger like I was before. But no one — I mean, who in the world would think I have one sprained finger, quote-unquote, ‘sprained finger’, I only had one joint that that hurt. Now, that is weird. But then, that was for a couple years before diagnosis. Then when I got my diagnosis, or the reason I got my diagnosis, is that I then, after I lost this 25 pounds — wait, yeah, 25 pounds — I can’t even explain how I thought I was just dying and that but if you think you’re dying, and then everyone’s like, “But you’re just anxious.” I’m like, I can’t win because I am anxious, because I feel like I’m dying. 

Emily:

Yeah, understandably. You’re in your early 20’s.

Cheryl:

But if I tell you that, then you’re like, “Yeah, you’re dying because you feel that way because you’re just anxious.” I’m like, no, I’m anxious. But something’s happening in my body. I know something wrong is happening my body. But every time I say that, I sound more crazy. It’s kind of like Taylor Swift. Like, “Every time you say I sound crazy, I get more crazy.” So, anyway, but then I woke up one morning, and lucky for me, all of my fingers, toes, every single joint, knees, elbows — suddenly, it wasn’t just one sprained finger. It was everything. And that’s when I got my diagnosis. And I’m like, okay, yeah, “You were not lying about not having an eating disorder. You actually have rheumatoid arthritis.” Anyway, but point being sorry, but that is even back then, yeah, there was a lot of variability. And I do know that a lot of people did say they’re worried because at that point, the biologics were so new that they didn’t know the long-term side effects. So, they didn’t know if they’re going to be causing cancer and stuff like that. So, anyway, sorry. I just want to make sure people who are listening now know that a lot of people do want to be conservative at first, but the best practice is to be more aggressive with medication at first and then taper down later.

Emily:  

Yeah. Well, and I do, you know, to give credit to the medical professionals that I did see, I mean, they, you know, my bloodwork was negative, so I think they were like, you’re a 23-year-old who’s been an athlete. Like, I was strong, you know what I mean? 

Cheryl:

Yeah, it wasn’t like my wasting. 

Emily:

I wasn’t, yeah, like, we presented very differently at the time. And I would go in and sort of, and I would have all these sort of, like, I was questioning things. I was nervous, as we said, like, I was not a medical professional, but I was like, “I just get this weird swelling, and stiffness, and pain for like three months. But if I get moving around, I feel better. And so, it’s fine,” you know what I mean? And they were like, “Yeah, that sounds —” and I was like, but what —? The thing for me, and this is such like a personal little side thing, but I remember — and I don’t remember when this was but it was after I had at least seen one of the rheumatologist who said, “Yes, I think it’s RA,” you know, blah, blah, blah. In the beginning, I didn’t know what that meant to me. It was like, oh, a special kind of arthritis. But like, okay, it’s arthritis. It was that I would totally fell into that misnomer of like, “Hey, it’s just this.” And I remember calling my mom who — my mom is a nurse — and I remember, and she was a, you know, there’s that there’s a whole joke of like, you’re raised by a nurse, which means like, there’s never anything wrong with you. Like, everything is like, “You’re fine. Just rub it, you’re fine.” Which was totally like, that’s a joke in our family. When I called my yeah, like, when I call my mom and told her that I had RA, she immediately went, “No!” like, yelled into the phone, “No!” because she knew what that meant. And I just remember being like, this is my mom who, who says everything is fine. It’s no big deal. Just deal with it. And I don’t — she’s not harsh, don’t get me wrong. Like, but, you know, because she also has enough sense to know if it’s really a serious emergency or not, right. And as an ER nurse with my kids, I get it. But she was like, immediately was like, “No, that’s a terrible diagnosis.” And that’s what actually kind of scared me in the beginning. And then, I started doing some research. And I was like, oh, this is not a good thing. I’m like, this stinks. 

And I remember trying to find books on it. And a lot of the stuff I read was all about people who are older. I mean, it was truly like, at that point, it was like everybody’s in their, you know, 60’s or 80’s when they get RA. Like, what? How am I —? So yeah, so that, but that kind of, I was saying, like, I saw a bunch of different doctors, like I saw them over the first few years. And then, but it would also be like, I would just see them when I would have the symptoms flare up, and they’d flare up in the summer. But then I’d go for like nine months totally fine, going to the gym, working out, you know, doing all this other stuff. And to that point, my husband — so, he’s my husband, now we’ve been married for a while. At the time, he was my boyfriend. He ended up having a huge medical situation, which is what led me to become a nurse. So, it was like, he had this huge thing that — it’s a long story. But basically, he was in the ICU, he’s in the hospital, in and out for several weeks out of a couple different months, and he was out of work for six months. Like, it was a very, it was a big thing when we were in our mid 20’s to go through. And I was like, this is fascinating. I think I want to be a nurse now. And so, I became a nurse, which is great. 

And then, and so all of it, all of my symptoms, even when I was flaring, they were still manageable. They were still pretty mild. And then, I was looking at this before, because I did try — at some point, they did get a little worse. And I tried some of the other first ones like Diclofenac or like Voltaron was one I tried early in the game. Plaquenil was one I tried for a little bit, but I had issues with my eyes. And because of that they wouldn’t let me take Plaquenil for more than a very short time. And I did go on methotrexate for a little while, but it didn’t work really at all for me. And methotrexate, I remember when I went on it, I went on it for a period just to try. I think we went on — I think I went to methotrexate after my first daughter was born, because I didn’t want to go on it before having kids because I was nervous about that. But I had my first and then I had really bad flare-ups after each child was born. And it also seemed to just take me up a notch in my disease progression. So, after each kid was born, I ended up on a higher, you know, a more serious drug. And my symptoms were worse and I had to manage it. So, like I was on methotrexate for a little bit, and then it didn’t work, went off of that. I think steroids were always the thing that saved me out of those bad flare-ups, which, you know, I’m sure you know, prednisone is like, I love it and I hate it. I love it for three weeks and then I’m like, get it away from me.

Cheryl:  

They call them the Devil’s Tic Tac’s. 

Emily:  

Exactly. And that’s, I tell people that all the time. It’s true, I always say that. And I’m like, it is the Devil’s Tic Tac’s because it’s just so, it’s so double-edged. It’s like, you get that relief, but then it’s not worth it. And I did do like acupuncture and stuff in there, and I was on like a bunch of herbal things. And I had different experiences with that. I had like, one acupuncturist was excellent. I tried another one when we moved to Maryland from Virginia, and it not fab, you know, so that’s another, you know, being a clinician, I get it. You know people are have different strengths and so you have to figure out what’s going to work for you. But so, yeah, so I tried different things. I don’t even remember what the question was? I’m so sorry.

Cheryl:  

No, actually, it’s perfect because the initial diagnosis, well, I think there’s the initial diagnosis journey. And then, there’s the treatments, you know. I put this in my notes. I have ‘treatment story/saga’ because sometimes the treatments, it’s, you know. [Laughs]

Emily:  

That’s exactly it. That’s exactly what it is.

Cheryl:  

Again, I think for me, I had this weird like, I had this honeymoon period with rheumatoid arthritis when I had the textbook positive story of I had all — I didn’t have any of the classical markers until I did. And then, at the point where all my joints started hurting, I had every possible, everything was positive, everything was off the charts. So, and then I went from that to everything bloodwork looking good, no inflammation, no subjective symptoms. I was — and they told me, “This is what we hope. This is what we hope happens. You go on the medicine, it puts you in remission. You just take the medicine and yes, it may have some side effects, but we’re gonna be optimistic here.” And so, I was like, check, check, check. I figured this out. Like, X’d this off of my life to-do list, just take this medicine the rest of my life. Like, go to the doctor every three months, get my liver checked ’cause I was on methotrexate, go off methotrexate when I have a baby. Like, I have my whole life planned out, you know. And I was like, okay, like, after the initial shock — sorry, I’m telling my story. Now, let’s talk about your story. 

But point being for me, it was like, okay, we figured it out. And then, but when the treatment became a saga was when my body created antibodies to Enbrel. And it was like that insert like cartoon like screeching halt. It’s like, [screeching sound]. Like, what? There was like Wile E. Coyote falling off the cliff. Like, but wait. They always say like insanity is doing the same thing and expecting a different response. Like, it can make you feel insane when you do the same thing and you get a different response. Like, but I took Enbrel. Like, Enbrel’s the situation. I just took it. Was there something wrong with it? Did I accidentally not refrigerate it correctly? And they’re like, “No, no, no. Your immune system is like kind of dumb and really smart at the same time because it made antibodies to medicine.” I was like, I hate it. So, anyway, so then it became more of a saga. But back to you. So, you’ve tried a lot of different things. I know that cannabis is something that you’ve tried as well. I would love to hear more about that, because that’s definitely a hot topic.

Emily:  

Yeah. Oh, I know. It is. So, I did not — I mean, I had tried cannabis as a kid, right. And then —

Cheryl:  

Kid? Kid kid? Or like, teen?

Emily:

Well, sorry. Teen. 

Cheryl:

Sorry. I was like wait, wait, that’s not normal.

Emily:  

Late teen. So yeah, sorry. So, late teenager. I played around with it a little bit in college.

Cheryl:  

Got it. Yeah. Yeah. 

Emily:  

Not a kid, sorry. And then, I’m trying to think, it was actually — I’m trying to think when that was. It must have been 2018 because — definitely it was 2018. My daughter was, my third daughter was born December of 2017. And I know with her, I was on Enbrel, and I remember it because I remember getting in touch with a doctor like, could I breastfeed with Enbrel? Is this going to be safe? Like I really, she was a preemie baby, and there’d been a lot of complications. So, I was like, I really want to breastfeed her, this is really important to me, but also, I cannot function. So, can I use this Enbrel. And I was trying to remember when I really, this was when I started — I think this is when I started taking Enbrel and I had some relief, but I also, Maryland is a medical — well, I don’t say ‘marijuana’ because it is a lot of people consider it a pejorative term. So, I do always say ‘cannabis’, but medical marijuana program. So, it’s one of those things, but I always trip over it because I know that it’s a word that I don’t like to say, so. 

Yeah, but so I was just I, established myself as a patient and said, I just, I gotta try something because I’ve now got these three kids and I can’t keep up. And at the time, I actually was not working at that time. I had taken a little break because the ER had gotten really hard to keep up with two kids and the ER, and so I wasn’t even on a maternity leave at this point. I was just not working for a period. But so, I started using cannabis. I will tell you, and this is part of the reason that I’m now getting a master’s degree in medicinal cannabis and why I’m happy to talk about it because though pretty much every single state, the way that they’ve set up the medical programs, and I’m talking about specifically medical programs, is there’s a lot missing for patients. And it’s really frustrating as both a patient and a medical professional that we’re toting this as medicine, we’re pretending like it’s medicine only because it’s a workaround for people to get access to it, but the fact is, it truly is a medicine. And it was used as the medicine for tens of thousands of years way before we ever turned it into the gateway drug. It was a medicine way before that. So, historically, internationally, all across the world, particularly in Asia, but all across the world, it was used medicinally. It used to be in the US Pharmacopoeia, like it was listed as a medication. Yeah.

Cheryl:

Oh, my gosh.

Emily:

Yeah. Like, it was all there. 

Cheryl:

I didn’t know that. 

Emily:

Yeah, most people don’t, because especially those of us who grew up in the 80’s, it was the number one bad drug that’s going to ruin your life and set you on a path to all these other drugs. Well, it just, it didn’t. It wasn’t that. There’s a whole lot of reasons. Most of them are politically and racially charged. Anyway, that’s another soapbox I could get on. But so, what’s hard about cannabis is it definitely can help with a lot of things that I experienced with RA and I think a lot of people. Like, it can help with the physical pain. It can also help with the anxiety and depression that I certainly experienced and I’m sure a lot of people do. You can also use parts of it that do not impair you so that you don’t get the high feeling, you just get physical relief or spiritual relief. And I’ve been using it regularly now for years. And I can tell, I mean, I’ve never once gone to work impaired, obviously. I’ve never once even been worried about it. Like, you can act, you can manage it that way. And it’s helped me so much with RA because partly because I’ve been willing to experiment. Now, I don’t necessarily think that’s the case for everyone. But unfortunately, that’s what we’ve set up for people. We have, like, I go to the doctor. The doctors can write certifications, which means you get to have access, but they do not write a prescription. There’s no prescriptions.

Cheryl:

It’s so confusing. How are you supposed to be able to get it? 

Emily:

This is the problem. You walk into a dispensary and you talk to somebody who’s got a high school diploma and no medical training. And they go, “Well, this one smells really good. So, get that one.” And it’s terrible. I’ve experienced it. Yeah, it’s very frustrating. So, if people are interested in cannabis, I would say there’s cannabis — cannabis nurses are a thing. I know a whole bunch. So, if someone wants to meet, you know, in person with one or something like that, I mean, I could easily connect people. I don’t work as a cannabis nurse right now, for a number of reasons. But I could certainly connect people to one, but I do talk to a lot of them. And I mean, I’m doing a lot of research in school right now, to figure out what I need. But there’s truly, there’s a whole world of science behind this, that legal, political things get in the way of, and it’s really unfortunate.

But there’s also, there’s an organization called Americans for Safe Access, or ASA, and they are — they basically are just about patients. They advocate for patients. So, they are advocating for patients to have access to cannabis. And that doesn’t just mean a state that makes it legal. It means having it written into the law, things like okay, can patients have cannabis be delivered if someone is homebound and they can’t get to the dispensary? It means actually rescheduling cannabis out of a Schedule One which is which is what it is now because of the CSA which was passed in the 70’s. They made cannabis one of the — it’s a Schedule One along with heroin and LSD and other things which means very specific things. It means these three things. It means one, it has no medicinal value. It means a high — it means that it has a high danger of abuse. And what’s the third one? Now I’m blanking out and trying to think of it right now. There’s a third point that is… What is it? I’m sorry, I can’t remember right now. But basically, the point is, it makes it so that you can’t, we can’t research it in this country. No research can be done on Schedule One drugs. And so, the problem — and when I say drugs, I also mean medicine. I’m a nurse. So, to me, drugs are medicine.

Cheryl:

Yeah, it’s true. Yeah.

Emily:

I’m not talking about street drugs, right. Okay.

Cheryl:

Right, right. Right.

Emily: 

But so, that’s what’s so frustrating, is that we are missing out on all this research that we could be doing. And sure, there’s people like me, there’s also kids who have disorders like Lennox Cristo syndrome, which is when they have hundreds of seizures a day and they have no functionality, no quality of life. Those kids take really high doses of CBD. And there is a drug that is approved by the FDA called Epidiolex or Epidiolex, sometimes people say it that way. But if CBD and kids take it, these kids, they take it and their seizures, they don’t go away completely. But they can function. And I’ve seen the kids speak. Like, I’ve seen them present at conferences. These are kids who would have died. And they’re alive and functioning now. And it’s not, they’re not like a hundred percent. But anyway, the point is, what’s frustrating is we do have FDA approved drugs. We also have, there’s seven or eight patients — I think there’s only one left — from the 70’s that the government, the federal government, was sending patients cannabis. Literally rolled joints. They would get 10 joints today. They’ve been doing that since the 70’s. They still are. Just those patients, though, because they got in before —

Cheryl:  

The seizure. Yeah, okay. 

Emily:  

No, not even seizure. These are like people who — so, there was this guy in the 70’s who, basically, he took it to the Supreme Court and said, “I’m using cannabis to treat glaucoma, and it’s helping me, and I need to be able to use it,” and he won. And so, the government — so like, this is what’s mind boggling about all of this. So, there’s FDA approved Epidiolex, there’s FDA approved Marinol, which is another cannabis drug, which is THC, which is the impairing component of the cannabis plants. So, we have that too. Okay. So, it’s not about what’s in the plant. That’s the thing. Because we have all these FDA approved things. And the government does send certain people things. It’s just they don’t — I think, well, there’s a lot of theories as to why. But the point is, cannabis can be really helpful. You just have to find the right people who know about it, because of what has happened in this country with outlawing it. It’s made everything confusing and wacky. And so, if you’re someone who doesn’t know a lot about it, and you get a card, you’re basically left on your own.

Cheryl:  

Yeah. And that’s really scary.

Emily:  

Which is hugely, yeah, hugely problematic. Because the other thing is, a lot of the dispensaries whether they’re medical or not, no matter where they are, they’re going for high THC content because that’s the thing, people just want to get high, right. Exactly. And I’m not going to demonize that. That’s its own thing. But for people like me, like, I do want some THC but I don’t want crazy amounts of THC, you know. There’s a time and a place. And if it’s dosed correctly, it’s a therapeutic medication.

Cheryl:  

Oh, I was gonna also mention that I did do an episode with Christina Montoya, who’s a registered dietitian, who’s also studied cannabis and she kind of gave Cannabis for Pain and Inflammation 101. So, I’ll link to that episode in the show notes if you guys want to learn more. But yeah, I appreciate you sharing that because it helps reduce the stigma especially I think when, you know, licensed health providers kind of speak to it. It helps people realize, oh, yeah, this is, you know, especially when someone’s living in pain, you know, why would you want to deny them something that could help. But I know that there’s going to be some people listening, one of the questions I get a lot is about pregnancy and having small kids with arthritis. So, that wasn’t even going to be the focus of our episode, but I am curious. First of all, like, did you have fears with even just your first pregnancy of how the rheumatoid arthritis was gonna go? Do you know what I mean? I mean, I feel like that could be a whole story on that.

Emily:  

Yes. And I remember, I was like, so with my first pregnancy, I was a little bit concerned, because it was like, oh, I have this condition. I have this thing now. But back then, I mean, I knew what it was, but it was still kind of dormant. Like, I would have these dormant periods. And so, in my first pregnancy, I was one of those people, actually, with each of my pregnancies where I had no symptoms during pregnancy.

Cheryl:  

Me neither. 

Emily:

At all.

Cheryl:

Yeah. I only have one pregnancy. But yeah, yeah.

Emily:  

Yeah. So, part of it was, I mean, by the time I got to the third one, I was like, I should stay pregnant all the time because this is when I feel the best in terms of RA. I just, I didn’t really work. My first and second pregnancies. I was really lucky. I had really easy, relatively easy — I mean, I had some things but, you know, like sciatica pain, not nothing. I was working through both of those. I worked 12-hour overnight shifts in the ER through both of them. I worked up until the day I delivered. 

Cheryl:  

Wow.

Emily:

I was — I was feeling —

Cheryl:

Nurses are a different, like, level. Like, you’re — I’m sorry, but just like, you’re a badass.

Emily:  

Well, thank you. But I also felt great.

Cheryl:  

I love you even if you’re not a badass. Yeah, yeah.

Emily:  

Exactly. I’m like, that’s the thing I’m like, now, I mean, now I’ll tell you, like, I actually — my last night shift in the ER was in September because I’m not doing that anymore, because I can’t for various reasons. So, thank you for that. But I did, with my third kid, there were some complications. And I do in my head kind of associate them with RA. Like, my body was like, “We’re doing this again? We’re like, really? You really are, you’re gonna make me do this again?” And she’s, she’s fine. But she’s had some health issues like, I mean, her umbilical cord it only had two vessels instead of three, you know, which, that doesn’t necessarily connect to RA. But in my head, it’s like, well, your body’s imperfect and it rejects itself, so.

Cheryl:  

I thought of that when I was pregnant.

Emily:

You know what I mean?

Cheryl:

Yeah, I had a textbook pregnancy except for gestational diabetes, which was like super mild and well controlled. But —

Emily:  

I had that with my third one, too.

Cheryl:  

I was like, really? And what’s hilarious is that I had gone to the certified nurse and midwives at the hospital, because I felt like, oh, I can have this like — because it wasn’t — your pregnancy, depending on, you know, you go to your doctor and see. But my doctor said in my current disease state at the time, I was not considered high risk just because of rheumatoid arthritis because it was well controlled and I could continue taking my meds during pregnancy, except for obviously getting off methotrexate before getting pregnant. But so, it’s not an inherently high risk. But remember, I asked the — so, gestational diabetes is more like type one than type two. It’s not caused by what you eat. At least, that’s what they explained to me, tell me if I’m wrong. 

Emily:

No, that’s right.

Cheryl:

But I thought it was my fault. But I had just, the funny thing was I had just asked the nurse midwife the week before, I said, “You know, like, I feel like I’m like, really craving sugar.” And she’s like, you know, she’s like, “Oh, you’re fine. Like, it’s not —” and she said something like, “Just as long as you just limit your sweets to like, once a week or something,” and I’m like, once a week? 

Emily:

Once a week?

Cheryl:

Once a day would be limiting. And then, of course, like a week later, I get diagnosed with gestational diabetes. Even though I know it’s not — actually, at the time I didn’t know it wasn’t caused by me. I thought it was my fault. You know, and I was like, curse you, I should have listened to you and only had one dessert a week. I was like, anyway, but back to your story. Sorry. But so, you had more complications with your third pregnancy?

Emily:  

Yeah. And it’s funny, you said that because I crave sweets with each of my pregnancies. So, like sweets with all of them. And I was, my first year I was fine. But yeah, that third one. And I was like, borderline. I remember, I had to do the one-hour glucose test two times. And then, I had to do the three-hour glucose test two times because they were both like, just kept being borderline. And I was like, okay.

Cheryl:  

You’re a nurse, can they just let you monitor your glucose on your own?

Emily:  

Yeah, it was like, oh, my God. And by the time I got diagnosed, it was funny because I finally get diagnosed and I’m having to like, manage it. Okay, fine. Well, then she was born early. So, I only had, I mean, like, I lucked out with a lot of it in that I only had to deal with it for a few weeks. And it was okay. But yeah, so.

Cheryl:  

So, you — yeah, I was just, I know a lot of people worry about, like, am I going to be able to cope with pregnancy with my condition or cope with parenting? And I think what’s hard is that you don’t — there’s an uncertainty to it. Like, 70% of people roughly go into remission during pregnancy, that you could be in the 30%, right, or the 70%. But I was similar to you in that I was like a bit, you know, because I’ve only had one pregnancy but, you know, optimistic and like, okay, I can handle this. And then, I had some other health issues, which made it so that we decided not to have, you know, to try to have another child. But it wasn’t the RA alone. It was the other stuff kind of all piled on top of each other. But — sorry, I forgot where I was going with that. We’re similar, really.

Emily:  

We are. Yeah, we are. And I do think it’s interesting, because like I said, like, I felt better in pregnancy. So, I was like, eager to get pregnant again, you know, like, it always felt like this is a relief for me. But after each pregnancy…

Cheryl:

Yeah, that’s what I was gonna ask. Yeah.

Emily:

Yeah, after each pregnancy, that — and part of he doesn’t want to like, scare people. It wasn’t —

Cheryl:

No, it’s your story. 

Emily:

It wasn’t terrible. But I mean, I just distinctly — so, with my first kid, I did have a bigger flare. But like, I honestly don’t even fully remember a whole lot of it.

Cheryl:

It’s a blur. 

Emily:

Yeah, exactly. But I remember with my second daughter, wanting to breastfeed her, like in the middle of the night, and I couldn’t pick her up. Like, I couldn’t. I couldn’t. I just remember trying to like scoop her with my forearms. Because my hands, I couldn’t.

Cheryl:

Same thing.

Emily:

Like, this motion and it, like, that comes right back to me where that felt — I mean, of course, it’s physically painful. You’re trying to feed this crying baby in the middle the night. The feeling of failure of like, I’m not physically able to do it. How is that possible? Like, and to your point. I’m a night shift ER nurse. Like, I was a division one athlete. I’m a badass… Am I? Because I can’t even pick up my newborn.

Cheryl:

But the thing is that — 

Emily:

So, that doesn’t feel good.

Cheryl:  

No.

Emily:

You know, like it’s… Yeah. A lot.

Cheryl:

No, it’s super emotional, especially if you’re a first-time mom. Like, I remember being like, do I have postpartum depression or not? Because, like —

Emily:

Yeah, because of the hormones that are raging.

Cheryl:

And I’m like, well, there are like, the question they asked us, like, “Are you having trouble finding pleasure in formally pleasurable things?” I’d be like, my life now looks nothing like it was before. Like, nothing I’m doing, I can compare it to a previous activity. Like, I didn’t have a baby before. So, I don’t know whether to compare I’ve relatively lost pleasure. Like, did I find pleasure in changing a diaper and waking up at 1? I don’t know.

Emily:  

Right. Right. Exactly. And that was where it was hard knowing what was okay. Is this RA, is this, you know, is it postpartum —? Like, and even after my third one was born where, like I said, I had a really bad flare, it was a worsened flare after her, I remember actually calling my doctor’s office, my OB, and saying, you know, I asked for some mental health resources, because I was like, I’m not doing great, you know. And their response — and I get this, because, again, being a nurse, I get it. But they basically were like, “Are you currently suicidal? Or are you like, are you planning on — are you going to hurt your children? Are you worried about hurting any of the kids?” Like, are you gonna hurt yourself or your kids, basically. And I was like, No, I’m not. I’m not at that point. I’m just like, I need some help. And they were like, here’s a list of resources. And I remember, I called a couple of places and like, two of them didn’t take my insurance. One of them was full and didn’t have it. Like, it was just like, and none of them could help me. And it was like, yeah, it was a really negative experience. And so, I just remember being like, well, I mean, but I also kind of stopped there and didn’t pursue it any further, because I was discouraged. But I also was like, well, I’m not going to go to the ER. I know exactly what we’re going to do there. This isn’t that situation? I don’t, I just have to like, buckle down, like, just get through it.

Cheryl:  

Well, I mean, that’s what outpatient therapy is supposed to be for, is there’s an intermediary between ER, like a psychiatric hold, and going out there and being on your own.

Emily:  

Right. So, that was hard. But, you know, I should have gotten therapy. So.

Cheryl:  

Yeah, no, big time on therapy. And one of my friends from swing dancing was pregnant. Same time, she gave birth, like two weeks after, and she had gone to a therapist, and she just recommended her therapist to me. And I was like, oh, good enough for Rebecca, good enough for me. Okay. Like, you know, I called a couple of them. And I, because I knew it’s really common, just if you’re looking for therapy for the first time, it’s really common to have to like, do initial appointments at a couple of them just to kind of see, you know, who vibes well with you because it is a relationship, it’s a therapeutic relationship between you and the therapist. But yeah, yeah, it can be — I just think that the decision, family planning decisions, are really loaded when you have a chronic illness. Or there’s, I know, some people listening might have gotten diagnosed postpartum, and then you’re like, well, I made this, I had this life plan for myself, how I was going to be a parent. Because at least we knew we had RA before me, it’s like, we can make an informed decision, right. But other people, I do feel it’s like, you feel trapped. You’re like, “Well, wait a minute, like, I can’t deal with this. Like, I can’t deal with learning this whole disease for myself, and learning how to be a parent.” Like, it’s huge learning curves all at once. So.

Emily:  

Yeah. And I can’t — so, yes, we had RA, but I will say this, it felt like a different disease after each kid. Like, that felt like a big turning point for me. Because it did. It was like whoa, this is worse than it was before.

Cheryl:  

It’s like stage — it’s like they should be staged just like there is for cancer, you know, because no, it’s true, it’s exactly like me. When I was in medicated remission, I was like, swing dancing, playing indoor soccer, outdoor soccer. I would actually go play — I would go to work for eight hours, and then I would play outdoor soccer, and then I would like disgustingly not take a shower. I would go just take my soccer clothes off, change into my swing dance clothes, and dance for like four hours, and I would go to bed. Like, that was like my life, you know? And so, yeah, even if the diagnoses is the same then and now, now the disease has progressed, it is a progressive disease. So, it changes. And yeah, so that’s actually going to be one of our themes of today’s discussion is like how to cope with the harder seasons of your life, and yeah, what are things looking like for you right now?

Emily:  

Yeah, so this is actually a good point. So, and I think I told you this on one of our Rheum to THRIVE like one of the lessons I was on. So, I restarted Enbrel. So, I was on Enbrel in like 20— I don’t remember. I was on it for a couple years, like three years. And 2018 was in the mix there. And then, I went off of it in the very beginning of the pandemic because I started to have a flare. Which, honestly, I think I had COVID in February before we actually knew. Because I tested negative for the flu. But like, in hindsight, I’m like, I had respiratory issues, I had like —

Cheryl:

And you’d been working in the ER.

Emily:

I probably had COVID in February. Right. So, it was like, yeah, and I, you know, I work in Northern Virginia. So, we get international like, you know, we get people from all over the world because it’s local to all over the world, like people flying to DC for things, right, and then they end up in our area. So, anyway, so… Yeah, so I just lost my train of thought. Sorry.

Cheryl:  

Oh, you just restarted Enbrel. 

Emily:  

Oh, yes. Okay. So, I was on Enbrel. It was great. Like you said, I was doing, I was weightlifting. I had a personal trainer. I was doing, I felt amazing. And then, started to flare and I kind of thought, oh, this might just be like, you know, whatever. Like, you make excuses for it. But I mentioned to my rheumatologist and she was kind of like, well, oh, no, you know what? That was when I switched rheumatologists, because so I had gotten really bad shoulder pain in one side. And basically, the rheumatologist was like, well, that’s not RA, it wouldn’t be in one side. You have to go see someone else. And I had been complaining about it for a couple months at this point. And then, I switched to a different rheumatologist which I had been with that one for at least seven years. So, like, I don’t want it to seem like I was jumping all over the place. Like, I’ve been with this one for a while. She’d seen me through all my pregnancies. She had seen me as this progressed, and all of this. And it got to a point where I felt like she wasn’t quite addressing that need. And anyway, so, I did go to different rheumatologist. That doctor ended up draining my shoulder. I had bursitis. And she drained my shoulder on the spot and gave me a cortisone shot, which, to this day, I’ve never had pain like that again in the shoulder. And that was in 2018 or 2019. So, yeah, so that was really positive. But she took me off the Enbrel. And in hindsight, there’s a part of me that wonders if that was the right choice. It doesn’t really matter now. But she felt like well, it’s not working. You’re flaring. Plus, this is an additional thing on top of the inflammation you already have. So, she took care of that. We ended up putting me on for Rinvoq. I think that’s what I went on first. And then —

Cheryl:  

I’m saying yeah because I know. So, yes, I remember that.

Emily:  

And Rinvoq, I was excited because it was a pill instead of an injection. And I just want to say, like, I’m a nurse, and I — nobody likes getting shots. So, I was really excited about it like, oh, I don’t have to do a shot every week like I’ve been doing it last few years. So, Rinvoq was exciting, but it didn’t — it sort of helped but it wasn’t great. And there were issues like palpitations and things like that, that just weren’t ideal. So, then we tried Humira. Humira was not good for my body. I know it’s worked for a lot of people. 

Cheryl:

Yeah. But everyone’s body is different. 

Emily:

Exactly. And this is sort of my plug for like, it is a journey. Like, don’t, you know, and you can have the disease forever and it changes. Your body changes. So, then the medicines work different. It’s so hard. It’s just such an ongoing thing. But so, we tried Humira for a while. That was not good for a lot of reasons. And then, so now I’m back on Enbrel. And it does seem, I think it is working. Now, I just got my flu shot on October 1st. And I don’t know if that’s sort of playing into it. It’s always a question of like, is this the thing? I don’t know. I get flu shots every year. So. 

Cheryl:  

Right. Right, right.

Emily:  

You know, I’m not saying it’s that, but right now I am having a little bit more disease activity, I will say, than I have had in the past on Enbrel. So, that’s where I’m like, oh, I wonder if this is just like, this is where we are now. This is how Enbrel works. And so, yeah, so it’s an ongoing discussion. And I think that’s one of the things that I feel like I wish — I mean, I didn’t know anybody when I was diagnosed. Like, I was just in my own world, you know, but I feel like that’s such an important thing for people who are newly diagnosed, and for all of us who are still dealing with it, you know, nearly 20 years later, to remember is that it’s just, it’s not just like, like you were saying, like, it’s not like, “Okay, diagnosis, here’s the treatment, and now you’re good.” It’s like, it’s autoimmune. 

So, as long as you have this body, we’re going to be re-evaluating, reassessing, refiguring out what works and what doesn’t, and that kind of thing, you know. So, for me, I think it’s really important to have something that’s managing or treating the progression of the disease, which is why I still take a biologic, you know. I still want to have those kinds of medicines, hopefully, to be doing their job in my body, right. That’s why I also use the cannabis because sometimes, there’s not, you know, the symptom relief that you need from the biologics. And so, the two need to work together. So, for me, that’s what works the best. But sorry, this was the point I was trying to make. But the ER has been my home for the longest time. But now I’m in a phase of life where I’m in grad school, I’ve got three kids who are getting older. And while on one hand, it’s like they need less from me, they don’t need their diapers changed and that kind of thing. But they’re doing sports, or they’re doing whatever.

Cheryl:

It changes, yeah.

Emily:  

So, I need to be around for that. And so, I’m balancing a couple of different, I call them gigs, because that’s what they feel like. They’re nursing jobs. But like, they’re gigs that I that I kind of fit into my life however I can. And then, you know, I’ve got school and got stuff going on. But so, the main thing, though, that’s different is that my daily management of my symptoms takes a lot more time now. And so, working a 12-hour shift is so much harder, because I need to have time to come home and stretch for at least an hour after. I stretch every single night. I used to call it yoga. Now it’s become, it’s not even yoga because I wish I did more yoga, but I sometimes can’t escape for the mental break to actually do yoga where I’m mentally there, or I can sit and stretch while I’m helping with math homework.

Cheryl:  

Right, right. Right. Right.

Emily:  

And that’s — it’s essential. I mean, I cannot — I just have to do that. And so, there’s things like that that have come up now. And that’s just part of what I have to do. So, yeah. So, I forget again what the question is.

Cheryl:  

No, no. It’s good because we’re talking about coping with when you’re flaring and when you’re in these kind of I would call them ‘grey areas’ between fully well controlled disease — like remission, medicated or unmedicated — and then full, horrible, debilitating flare-up. Like, a lot of our lives, we’re living somewhere in between those two. I mean, ideally, you get to remission and stay there forever, and some people do, but a lot of people, you know, this is a disease characterized by flare-ups and remissions, kind of like, you know, some types of multiple sclerosis. So, but I think that that’s what makes it so hard. We’re telling people all the time, or I’m telling people all the time, you know, get used to uncertainty, and you have to accept it. But it’s like, how do you plan your life? Like —

Emily:

Exactly.

Cheryl:

When like, some days, you can work as a 12-hour shift nurse and then go play water polo and other days you can’t.

Emily:  

Right. Yeah, yeah. And I, you know, I think, for me, like, probably, maybe it’s stubbornness. Maybe it’s not wanting to let go of the functionality I had in the past. I don’t know. But I feel like I sort of get to the point where I get almost to the point of like, I’m gonna collapse. And I start to, I just sort of go, okay, I’m doing too much. So, and that was kind of what was happening like, during the summer this year. It was sort of like, okay. I’m okay. But I’m bouncing a lot. And I, you know, I’ve added in school, so like, there’s new things going on. So, can I really continue to do this to myself where I did the 12-hour shifts in the ER? And if anyone’s wondering, yes, I tried to go to Daze. That was not allowed. That’s just a separate thing over here. But that’s part of it. If you have a working environment that is not supportive, or sympathetic, or compassionate, which for various reasons, you know, I mean, on some level, they can’t really accommodate.

So, you know, but it got to the point where like, I started having to wear braces or my gloves, things like that. Like, I couldn’t get through a shift or that — or I can’t work gloves on my hands. I mean, I wear rubber gloves, but I can’t wear my arthritis gloves at work. So, if my hands are really bad that day, it’s like, well, now I know I’m going into a shift with just pain pulsing through my hands. You know, it just, it was like this doesn’t — maybe this isn’t the right thing for me anymore. And that’s okay. That was a hard thing for me to accept. But it also wasn’t a rushed decision. I think it’s really important for people to go, “Is this a grey area? Like, is this a flare-up where I need to manage it for right now, but then it’s gonna get better? Or is this, you know, are there other reasons?” I mean, I had a lot of reasons to leave the ER. So, for me, it was like, there’s this, my health is a huge one. But there’s all these other things too. And it’s like, if you combine all those things, could my quality of life be a lot better if I gave up this job that I did identify as, you know, part of my, it was part of my identity for so long. But can I get over that and kind of make it look different? You know what? Yeah, I can. And it’s time to do that. It’s time to put some other things first.

Cheryl:  

Yeah, I mean, I guess I would just imagine, and this may just be a misnomer, but that it would just be a very stressful career, working in the ER. Call me overly anxious, but I would find that a difficult environment to be in, like, regardless of chronic illness. 

Emily:

Yeah, yeah.

Cheryl:

I mean, I always think of that quote like, “Life is full of suffering, but it’s also full of the overcoming of it.” So, I guess you, you might have some job satisfaction seeing like, oh, you’re able to catch a heart attack early and the person survives and makes a full recovery. But I mean, I don’t know, how did you manage stress working in the ER?

Emily:  

You know, I think, for me, it was always, it was always the greatest honor. And I always — ‘honor’ was always the word that came to me, it was always the greatest honor to know that I could be that person who on someone’s worst day of their life — not everybody’s having the worst day of their life in the ER, of course, like, we get a lot of stuff that’s not emergencies. But when people are having true emergencies, and they’re terrified, I can come in there and go, “Okay, let me explain to you what’s happening. Let me explain to you what we’re going to do. This is how we’re going to try to help you. If that doesn’t work, let me know.” Like, I can take control of that situation and I know exactly what to do. I mean, for the most part, you know. And so, for me, it was always actually really empowering to be like, oh, yeah, I’m the person who’s gonna help you feel better. Like, there’s just no greater honor.

And even if it’s, I mean, you know, like, when we did have people die, and the family members are standing there, like, there’s no — there’s just nothing, there’s nothing that feels like that when, you know, they’re having the worst moment of their life. And, but they will say to you, like, “Thank you so much,” or, you know, like, you’re sitting there holding them while they’re crying. And they’re like, “Thank you for doing this,” or like, you do the littlest thing, like, “Let me get you a cup of water,” and they’re like, “You’re so —” they remember that. I mean, I’ve had people send flowers to the ER and stuff because, you know, I mean, I’ve also had people, you know, I’ve been there, I’ve delivered babies, and they’re like, “Oh, my God, thank you so much.” You know, like, it’s that human interaction that is just so rewarding. So, I mean, I think — and it suited my personality, like, I was always kind of a, I’m always been loud and kind of boisterous. And I want to move fast. And I liked the action and all of that, you know, so like, I remember when I went to the ER, it was my first job out of nursing school. And I was like, these are my people. Like, this is where all the gross stuff that everyone thinks is so disgusting, I love all that stuff.

Cheryl:  

This is where we’re different. Yeah. I almost fainted the first time — I have fainted, actually, in —

Emily:

Really?

Cheryl:

I fainted visiting a friend. I used to work in HR at a hospital before I became an occupational therapist, and she had a — she’s sadly passed away, but she was a swing dancing friend who had a lot of heart issues and she’d had a heart transplant. And I was like, oh, I work at the hospital, I’ll come visit her. Like, la-dee-da, like not thinking I was gonna be, you know, because I’m like, this is fine. Like, she’s just, she’s in the cardiac ICU, but she’s awake and alert. And, you know, I didn’t know those terms and everything but I go in there and I’m just, I just see all these wires connected to her, and the scar, and I just wasn’t — I don’t know what I was thinking I was gonna see. And obviously, you know, and I didn’t — I held it together while I was there with her but then I took one step out the hallway and just collapsed. And then, my vision — I had never fainted before. But anyway, but yeah, then they took me to the ER of the hospital, they walked me down over there. I always said I’ve only been to the ER once but technically twice, I guess. But no, they had an urgent care attached to the ER. So, they did like, they looked at my blood sugars and stuff that like, and said that like, “You just fainted. You’re fine.” Yeah, but anyway, sorry. Sorry. But yeah, so I love that there are people like that. My sister works in the neonatal ICU and she’s seen a lot of stuff. And it’s —

Emily:

Yeah, that’s a special thing altogether.

Cheryl:

Every time she sees like a full-term baby, she’s like, “It’s huge! That baby is a giant,” and you’re like, my child is seven pounds. She’s like, “It’s so big!” But anyway, but I’m glad there are people, because I need that when I’m in a state of, you know, I need someone that has a calm head and a warm and competent, you know, presence. But yeah, I’m just, you know, have struggled with stress management in working as an occupational therapist, and I’m like, we don’t actually do any of the life or death, you know, we’re about quality of life, right. But yeah, I, apparently, to my brain, sometimes quality of life is a life-or-death issue.

Emily:  

Well, you know, I always tell people this, too. I’m like, people are like, oh, you know — but thing is, things get real clear when it’s life or death. Like, it gets really easy to prioritize when it’s life or death, you know. 

Cheryl:

You know what, I know what you’re saying.

Emily: 

So, that’s the thing. Because when the ER is like, when it’s crazy, and we’ve got a line out the door, and, you know, people have got abdominal pain and someone, you know, sprained their ankle, and, you know, there’s all these things. You’re like, like, that is kind of stressful. You’re like, oh, my God, we’re trying to go as fast as we can. I’m trying to do all these things. But then, someone rolls through the door having chest pain and it turns out, they’re having a heart attack, guess what. Everything else stops. We don’t deal with any like — I mean, depends on how many people you have in ER, right? The resources you have, not everything stops. But if you’re the person taking care, and like, I would often be the charge nurse. So, like, if I’m in charge of the whole ER, all of a sudden, I’m not worried about any of those people. I’m worried about this one right here. They’re the one that’s gonna go. And in that case, we know exactly what to do. Like, there’s very specific steps that we do down to the tee and everybody knows what to do. So, everybody’s automatically like, okay, we’re pouring resources into this person; we’re gonna save their life. You can wait with your sprained ankle. I’m sure you don’t want to, but you’re gonna have to. Then you just move on. So, sometimes like that forced clarity is actually really nice, because it’s like, nope, this is more important. It’s just that easy. It’s not me making a judgement call. It’s this person is going to die if I don’t. Yeah, it’s just what it is. So, I mean, you know, it just makes it easier sometimes when you’re in it.

Cheryl:  

No, it’s so true. We once, Charlie, when we took him in for like an issue where he didn’t need to see his regular pediatrician. It was like an ear infection or something where like, you’ll just take first available pediatrician. And the one that was there, he had told us he used to be in the ER and now he works as a regular pediatrician or, you know, just general practice primary care. And he says, oh, this is way harder than in the ER. And he wasn’t — he didn’t say it that way. But he said it like, I said something like, “Oh, wow, ER, that’s, oh, that’s —” because he’s like, “There’s so many cases where kids come in, and it’s like, 90% of time. It’s not a big deal. But what about if it’s that 10%” Like, I had one of my very closest friends, her child had really bad RSV at six weeks postpartum. And she took him in like, three in the afternoon. They’re like, “Let’s monitor and come back tomorrow if it’s worse,” and then by like 8pm, they went to the urgent care and they’re like you, “You are going straight to Seattle Children’s.” The baby was intubated, like tons. Like it was near death, you know, and it happened so fast.

Emily:  

Yeah, respiratory issues with kids are scary, because they tank really quickly.

Cheryl:  

Yeah, so scary. Anyways, I’m like —

Emily:  

But yeah, that’s exactly it. You’re like, because it’s, you’re like, you have to make a judgement call. Someone comes in with a heart attack, you have to make a judgement call.

Cheryl:  

Like, you’re like, this is a heart attack. Yeah. Yeah, that’s interesting. But I think that’s such an interesting juxtaposition, though, for you of being like, rheumatoid arthritis is like the definition of a chronic condition that is not immediately life threatening, but it is, it does slowly take years off your life if not controlled, you know, it’s about average — before the current era of medications — the average life expectancy for someone with rheumatoid arthritis is seven years less than the average person. So, yeah, sorry, not just not to bum anyone out. But that’s why your mom was like, aware, you know, like, aware of, and that’s what they had explained to my parents, too. Because I’m like, oh, arthritis, okay. Like, it’s at least it’s not, it’s not lupus, it’s not cancer. It’s not, you know, these things that, like, multiple sclerosis, people seem to understand, like, it’s a big deal, you know. But, you know, there’s all these little things every day where you’re having to over time that they add up and always in grey areas. And I think that there’s this kind of, I don’t know if you relate to this at all, but this kind of, I think you touched on it earlier, this kind of question in the back of your head constantly like, “Is this as good as it gets for me now this long into the disease?” you know? 

Emily:

Oh, my God. 

Cheryl:

Right? Like, how do you know what — like, I had to actually bring it up to my doctor the other day, or I brought it up to her because I was like, I don’t like, you know, the whole idea of treat to target. You’re supposed to identify the target, you know, the doctor, the patient, identify the target, which is, in the beginning, it’s really obvious that you’re trying to target full disease control, you know, with persons diagnosed the first couple years, get the fire under control, get them into remission however you can. But I’m like, how does that work when I’ve had it for 20 years now? Like, do we still target that? What do we target? And she’s like, and it kind of reminds me of that Marcel the Shell. And it’s like, it’s like people say — like, remember Marcel the Shell with Shoes On? And she’s like, “People think I’m weird. But I say compared to what?” Like, she’s a little shell with shoes on. Like, what are you going to compare it to? She said, “That’s a really good question.” And like, yes, like, as you can probably tell from our past decisions, we are no longer targeting like, completely. We’re no longer thinking like, it’s realistic for you necessarily to go into like full-full remission again, or like, that’s not what we were — we can hope for that. But let’s plan for well controlled disease to where — like, I told her, what I want is I just, I want to be not distractingly aware of my condition. Do you know what I mean?

Emily:  

Yeah, that is so — I’ve never heard anyone say like that. And that’s exactly what it is. Yeah, that’s exactly what it is.

Cheryl:  

One is like, you know, from being an athlete, it’s like, I want — like, I want, I don’t mind having that like muscle burn after I maybe overdid it. But what I don’t want is it to be so bad that it’s constantly distracting me from living my life. Like, you know, the amount of pain that I can, you know, quote-unquote ‘tolerate’. But yeah, just, so that resonates with you, too.

Emily:  

Completely. And in fact, like I was talking to someone the other day, because I was talking about how cannabis has helped. And one of the things that I was saying was like, if nothing else, it can get me to a point where for a period of time, I don’t feel pain anywhere. Because pretty much at this point — and this isn’t all the time. But right now, this is what I was saying to you privately before, right now I’m in kind of a hard season where I am in a mild amount of pain. It’s not, you know, on the number scale, I’d probably call it a three or four. And so, it’s noticeable. That’s why —

Cheryl:

That’s a lot for every day.

Emily:

It’s noticeable, yeah, for every day, all the time, where I only get a break for a little bit at night when I’m medicating and I’m done with my responsibilities for the day, got my kids to bed, I’m able to do my hour stretching, and medicate. That’s when my body feels better. And then, I can fall asleep, because I feel better for a little bit. And then, hopefully I stay asleep and then wake up. And when you wake up, I mean, I’m sure you can appreciate this. You wake up and you’re like, it’s another day. Oh.

Cheryl:  

Creaky joints. Yeah.

Emily:  

Right. And I mean, I lay in bed every morning and just start moving with this first. I mean, I lay there for, I don’t know, however long it takes. But that’s, you know, so yeah, I mean, I think — and that’s where it’s like, sometimes they ask the question, “Am I ever going to be — is pain-free a realistic thing for me to hope for?” I’m not really sure if it is or not. If it’s not, that feels like so much, and I know we’re going over time. Sorry.

Cheryl:  

Oh, no, we are fine. We’re fine.

Emily:  

Okay. But I it’s also one of those things where I, for right now, try not to think too much about it. Because I can’t do anything about this. I’m doing what I can do by managing it on a daily basis. And that feels like a heavier lift for me that I do have to manage it this much, this regularly every day. But that’s where we are. And ultimately, I have like, I have to be able to function for my kids, for my life, for everything. So, if that’s what is required for today, then that’s what is required for today. And I’m gonna do my best to meet those demands. So, I try to just do it one day at a time. But what is it you said? Distractingly —?

Cheryl:  

I want to not be distractingly aware of my RA. Like, I can be aware of it and have mild pain, because I have such a hard time rating on a scale of 1 to 10, you know. I like to break it down into the subcategories like it’s like a 5 on stiffness but like 0 on sharp stabbing pain, but like maybe a 3 on like soreness or hot tenderness, you know, but yeah, I think that’s where my —

Emily:  

They have different qualities.

Cheryl:

Yes.

Emily:

The quality of pain is different. And so, yeah.

Cheryl:  

And some of it interferes with your quality life more than others. But I think, for me, yeah, the mindfulness standpoint of like, what’s going on in the present because the future is so unknowable, you know. There were only three medications in the category of biologics when I was diagnosed. Now there’s nine, so maybe it is, maybe both of us will be talking in three years from now and be like, “Oh, I’m so glad that the new medication Zorbdanil —” whatever they call it, you know, yeah, “— came out, and now we’re in remission again, and that’s awesome.” You know, it’s like, well, it could be horrible. And it’s just, you just don’t know. So, you just have to say, this is what I know is the present, you know? 

Emily:

Exactly. 

Cheryl:

Okay. So, do you have 15 more minutes? 

Emily:

Oh, yeah, I have plenty of time. We can talk forever. 

Cheryl:

I know, I know. We’re Chatty Cathy’s. No, it’s so good. It’s so good. And I wanted to just touch a little bit, and not to like toot my own horn, but I did want to know what you thought of the Rheum to THRIVE group, which again, it can be challenging with the schedule you were working to make, you know, the meeting times that work for people. But what were some of the things that helped you? I mean, despite all the stuff, all the knowledge base that you obviously had going into it.

Emily:  

Well, but you know what, number one was the community because I never had community before. And so, just hearing other people talk, and having that validation of it’s not in my head, like, they’re feeling the same things that I feel, they have trouble with the same activities that I have trouble with, like, because I always — and I don’t know if a lot of people do this or, but I always default to, “I’m making this worse than it is. I’m making it up in my head.”

Cheryl:  

Totally. “I’m doing it wrong.”

Emily:  

Right, exactly. And so, hearing other people be like, “Oh, no,” like, you know, there were a lot of times where I was like, oh, my gosh, okay, it’s not just me. Like, other people get this, too. And so, there was a lot of third-party validation; that was awesome. And everyone was so helpful offering up, you know, different, whether it’s like tips, or tricks, or products, or, you know, resources to read or listen to. Like, all of that kind of stuff. And you can kind of pick and choose, which is really nice. I mean, I just never, I never really had any of that. And I never even, you know, my rheumatologist probably just weren’t offering up things like really like that. So.

Cheryl:  

Unfortunately, it’s, I really want it to be the standard of care at some point, you know, like, if you went through — like, when people get diagnosed with diabetes, they have certified diabetes educators.

Emily:

Educators. Exactly. 

Cheryl:

And it’s not necessarily a group setting, but at least it’s someone guiding you through the day-to-day realities. And then, with an optional, oh, you can add, you know, if you want the group support and the community, you know, then that would be ideal. I just like, I’m like too impatient. Like, I can’t wait for the health system to change. I’m gonna make this myself.

Emily:  

Exactly. And that’s like, and I think, you know, some of it for me also, particularly with you, is like, your story resonates with me in so many ways that it was like, oh, my gosh, you really get this. Like, and so like having the leader be you and —

Cheryl:

Oh, thank you.

Emily:

For being so — well, and truly, like, you’re great at accommodating everyone, you’re great at laying everything out, explaining everything, everything being accessible. There were several times — I think I told you this, I don’t know. I think I did. But like, I missed a couple, and I could go on to the website and like, go through the PowerPoint and watch the recording. So, it felt — and it was, it would be funny, because I’d be like talking to the recording as if like, oh, I wanted, I want to, you know, commiserate or whatever, you know.

Cheryl:  

Like, “Yeah! Me too!” 

Emily:  

Yeah, you know, but like, that’s okay. Hi, Teddy. Just being able to feel like if I was having a rough day or a rough time, and I could go to that resource and be like, just right now, I’m just having a hard moment. And that’s okay. And look at all these people who have these moments, too. And they get it. So, I can share that with them, even though they don’t know I’m sharing with them because it’s a recording. But I am sharing with them. It really it really helps a lot. So, I mean, there were so many things that were that were so helpful with it. And I think also it really empowered me to be like, “Oh, also, I want to, you know, ask my doctor about this thing,” or, “It seems like I could be handling this part better. So, I’ve got some ideas here.” But you know, and seeing what other people are doing. And that’s making me be like, oh, I need to prioritize this part because I’ve been putting up with it for so long, instead of actually trying to fix it. Let me see if I can do something about that. You know, so, yeah, I mean, there were tons of aspects of that I love about Rheum to THRIVE.

Cheryl:  

Oh, I’m so glad. No, and it really is — it is, like you said, it feels like an honor, you know, when you work in the ER, it definitely feels like an honor for me to be in the position I am with running, you know, running the groups. And, you know, I mean, it’s like cliche thing that teacher’s always say, that, “I’m supposed to be the teacher but I learned more than anyone else learned,” or whatever. Like, but I do, I always learn a lot and it’s like, it is therapeutic for me to hear the same thing you said, that I do tend to be really hard on myself. And even I’ll have these like meta thoughts like, “You’re the one leading the group, you should have it all figured out.” And I actually talked to my therapist about that with respect to a different job I had had as an occupational therapist, and I was like, “I hate saying, ‘I don’t know’ if a parent asked me a question, or if I just don’t. I hate the feeling of not knowing,” because there’s so many grey areas that goes with working in developmental disabilities like autism and stuff like that, a lot of grey areas.

And, you know, he was like, “Well, okay, like, you need to then —” or, okay, I had two different therapists, a male and a female. So, and people are like, that I’m always like, okay, the male one said this. And then the female one said this. But I had the female one first, and then I had the male one, but I talked to her and she brought it up, too. And she was like, “You know, if you wait to do things, like your life goals, like I’m gonna, I want to write a book, and I want to do all these programs, all these things,” she’s like, “If you wait until you know everything, you’re never going to do it,” you know? And I’m like, oh, that’s so true. Like, I’ve tried, I’ve kept that in my head. And then, the male therapist is like, “You know, what if you just practice saying, ‘I don’t know’? Like, do you need to question your question?” Like, question the assumption that I have is that I have to know everything before I can help people. Is that actually true? Like, do I have to know all the answers about rheumatoid arthritis, when actually, nobody knows all the answers anyway? You know? 

Emily:

Nobody has all the answers.

Cheryl:

Like, actually, don’t flatter yourself to think that like, you could even figure it all the answers. Like, because I literally — yeah, anyway. So, yeah.

Emily:  

Well, I was gonna say like, it’s interesting you say that, because I feel like, I mean, you definitely do feel like an authority on it, like I do — like, you’re well read. And you’ve definitely researched things. And I definitely appreciate that. But you’re also very relatable. And very, you’re also very open, and you put all of your own experiences out there, which I think resonates, you know. Like, I don’t want to listen to somebody who doesn’t have RA tell me about RA. I mean, maybe if they’re a doctor.

Cheryl:

It’s better than nothing. 

Emily:

And then studied it. Yeah, like them. But there’s a lot of value in hearing from someone who’s not only educated, but also totally understands the symptoms. I mean, it’s nice that you understand specifically RA, but, you know, with any autoimmune, there’s a lot of — with a lot of autoimmune, there’s a lot of overlapping symptoms. And so, like, you understand the complexity of that, and the emotional side of it. Like, that’s a part that none of my rheumatologists that I’ve ever had have really understood, or even talked about, is the mental health side. The anxiety, the depression. And I was never diagnosed with anything beforehand. As an adult, I do feel like I probably should have been, because of various things, which is a whole other story. But I’m, you know, I’m a functioning adult, so that’s fine. But like, that definitely plays into RA. And that’s something that they don’t really know how to talk about it. I don’t, you know.

Cheryl:  

They are trained, too. But if you do, you know, I think there has been a seen change in a lot of like, chronic conditions, I guess, or I would hope there would be. I might be just like selectively filtering what I see. But, you know, understanding that there are many triggers of inflammation, dietary triggers, sleep, exercise, lack of exercise and movement, and mental health, stress triggers inflammation, and that’s part of the ‘You have an inflammatory disease process’ but it’s just, they just don’t have adequate time to, you know, talk about everything that that they might want to talk about. But yeah.

Emily:  

I should just say here, they have all mentioned to me — well, the ones that I’ve had since I started working night shift — they’ve all said to me, like, 12-hour night shifts in the ER? Like, what? Do not do that, please. And I was always like, no, no, that’s not the issue.

Cheryl:  

I’m the exception. Yeah.

Emily:  

Right. So, they did try on some level with some things, you know, and I was like, “No.”

Cheryl:  

Oh, my gosh. So, again, there’s a real stubborn stripe and rheumatoid arthritis, for better or for worse. But okay, so it’s time for rapid-fire questions, which is, they can be — they don’t need to literally be like one word, but I have a list of fun questions. And first is like, what’s like your best piece of advice or word of wisdom or encouragement for a newly diagnosed patient? That’s a lot. It can be a whole episode. That is a whole episode. But yeah.

Emily:  

I know, exactly. Um, gosh, I mean, I think what I would say — we already talked about it — but it’s really just, it’s a journey. And if you come from a place of wanting to just take care of yourself the way that you would want to take care of a loved one, then you will see yourself  okay. But I just, it’s not a straight line, it’s not something that you’re just going to take, you know, take care of and be done. It’s just, it’s a roller coaster. And so, just know that going in that like, there’s a lot of things that are in your power to help take care of yourself and know that, but also know that there’s a lot of unknowns. So, just keeping yourself, you know, and what your needs are, and whatever those may be, and they might change. But like, just keep that in the forefront. And you’ll just have to keep course correcting as you go.

Cheryl:  

I know. I really wish I had thought of that when I got diagnosed or known that or internalized it. Again, my sister is actually really — she always mentioned, like it was really instructive for her to be like, she was at my bedside, like, during our C-section for Charlie, and then she was there, you know, the whole time. And she, after, you know, for two nights at the hospital, everything. And she says that there were so many times I told her, “No one told me this,” or, “No one told me that,” and she was like, literally physically there and heard them telling me, but she was like, the things we tell patients is not necessarily what they remember or hear.

And so, sometimes I say, “No one, no doctor ever told me this.” And then, I’ll kind of try to amend that and a lot of times be like, “I don’t remember anyone telling me this.” Because it’s very possible, you know, they said this. Like, I’m like, blah, blah, blah. They’re saying all these things in my head. The messages I’m filtering through are, in my initial diagnosis appointment, “I was right. I’m not crazy. I’m not a hypochondriac. I have a diagnosis. There’s some shit you can do about it. Woohoo!” What’s the problem? Like, why are you looking so serious? Like, this is a net win for me because it means I’m not suffering and literally wasting away for no reason. There was nothing stressing me out. Sorry, I feel very defensive about this. I’ve processed it many times, it is fairly going to be a perpetual problem. I’m like, just so, it’s so rare to have someone with no traumatic childhood, no traumatic events. Every time, both my psychiatrists and psychologists have confirmed, my family and my upbringing were a positive outlier. Like, literally a positive outlier. Like, wonderful family. Wonderful everything. Literally. I’m like, they keep telling me, “You’re just stressed.” Nothing was stressing me out! You people telling me I’m not sick when I’m clearly sick is what’s stressing me out. Like, getting sick. I don’t know, it’s a stressful experience, especially when every time you try to get help, they tell you —

Emily:  

They tell you you’re not.

Cheryl:  

You’re like, I — okay, now I’m officially stressed and about you people. Sorry. Oh, no. Back to you. 

Emily:

No, I get it.

Cheryl:

I’m sure, yeah, there might be some of those moments and maybe even in the ER where someone’s like, “I told the doctor that this is weird like, stomach pain I’ve been having in my lower left abdominal quadrant and they were like, ‘No big deal’, and like, it’s appendicitis. Like, I was right!” Is appendicitis in the right quadrant or the left? I always forget.

Emily:  

Well, it’s in the right quadrant. Your appendix in the right lower quadrant, but you can have pain in the left quadrant and it can still be appendicitis. 

Cheryl:

I hate bodies, did I mention?

Emily:

You can also, a lot of people start like periumbilical, which is like around the belly button. If it starts there, and then it migrates to the right, that happens a lot, too. But we usually, like in the ER, we look further but like, do they have a fever? Do they have an elevated white blood cell count? Like, there’s other things that we use. And then we CAT scan them and see their giant appendix.

Cheryl:  

Side note, I had a friend — I have a friend who had acute appendicitis at 32-weeks pregnant and it wasn’t in the right area. So, they didn’t catch them first because everything moves around when you’re pregnant. And then she had a successful appendectomy. And the baby stayed in until her birth. Isn’t that —? I know. They’re like, put me in the textbook. Okay. What is the favorite arthritis gadget or tool in your toolbox?

Emily:  

So, I actually was thinking about this. It’s my gloves, which I got because of you. My gloves and my mouse, which I don’t have because I’m not at my desk. But the mouse, ergonomic mouse. Yeah, I got it. Yeah, I got one. Mine’s blue, but it’s the exact same one. Exactly. And ordered it because of you. And as someone who, you know, that I started grad school, and it — I mean, it makes a world of difference. I never would have thought something like that, it seems minor but because I don’t sit in front of a computer all day or anything like that. But it’s, yeah, it makes such a difference.

Cheryl:  

This is like super nerding out, but like, if you do — I know you learn the anatomy and physiology in nursing school, but if you, you know, really get into like the kinesiology of the hand specifically, it has so many muscles, so many tendons, so many, you know, it’s those small changes holding a mouse like this versus having that rests, you know, having it more with your wrist like this versus that. There’s these tiny differences that make, yeah, huge over time. Yeah. And do you have a favourite piece of like, content you’ve either, like a book or movie or show that you’ve been into recently?

Emily:  

I just read a book.

Cheryl:  

Do you have any time? I’m like, three kids.

Emily:  

I did just finish a book that’s called — I wish I had it up here. It’s downstairs on my desk, too. It’s called ‘Cassandra Speaks’ and the author is Elizabeth Lesser. I think that’s her name. But the book is actually about, it talks about how a lot of the stories of the world had been told from a male perspective. And if they were told from a female’s perspective, what a difference that would make. It’s just interesting. It’s an interesting book. It’s really, yeah, it’s good. It’s good. And it just, it kind of helps you think about perspective, which you’re dealing with an autoimmune, and you’re not like, even in that, it helps with things. Because I’m like, Well, I’m projecting it that way, or I’m encapsulating my disease that way. What if I look at it from this perspective? Or, you know what I mean? Like, it doesn’t have to be all or nothing. I don’t have to be a varsity athlete anymore. I’m not a varsity athlete anymore. So, that’s not what we need to achieve. I don’t need to be, you know, but if I get up and move, is that good enough for me? Yeah, that’s good enough for me. So, like, it’s a great story. Like, it’s a feminist story. I’m kind of a feminist here. So, I like that. But it also was just about perspective and kind of thinking about things in different ways. So, it’s good.

Cheryl:  

I love that. And I think, you know, I think if you were an athlete growing up, it’s like, you define yourself by these results, right. But like, I got this, and I still remember my best mile time, you know, I’m like, I’m a badass, you know. But —

Emily:

Oh, my gosh. Yeah. But like, my daughter’s on the swim team. And I just entered that. I’m sitting there going, “Oh, when I was 11 and 12, I got these times.”

Cheryl:  

Oh, yeah. My marks were 62 or whatever, what were yours? Yeah, I know. It’s so funny. That stays with you. And it’s good. I’m always gonna be proud of that. But if you look objectively at the amount of effort it took, you know, me to run a five-and-a-half-minute mile is the same effort it would take me today to run, I don’t know what, eight-to-nine-minute mile route. Not even, probably more like nine to ten, because I’m really not in shape right now. But at the same time, that’s the same, it’s the same effort. So, what is it that you’re gonna define yourself by, you know? It’s kind of like that growth mindset thing they’re saying about kids, you know, you have to like, praise the effort, not just the result, but I’m like, yeah, human beings are always going to be results oriented.

Emily:  

But also — yeah, exactly. But I’m like that mom that’s like, not everybody gets a medal, okay. Somebody wins, somebody loses.

Cheryl:  

I told — I told Charlie as much. Like, you know, certain people, certain things come easily different people, like you learn to read really easily. Like, you are, he’s reading so far beyond just grade level. It’s crazy. But I’m like, but drawing is really hard for him. So, of course, where he’s taken for granted the things that are easy for him. And it’s like, but I really want to draw as well as, you know, this person in my class and it’s like, this is your best, like, you can’t do her best. Like, she’s doing her best. Like, that’s that same coaching my parents had to give me and it took a long time. Because I’d be like, I still remember like, Aimee Desaki, like her pointillism art was so perfect. It was so perfect. She got all her little dots, and I wanted to be like her so badly. So, anyway, we have to deal with issues. Do you have a favorite mantra, or inspirational saying, or something you repeat to yourself in tough times?

Emily:  

Well…

Cheryl:

It’s okay if you don’t.

Emily:

I know. I, you know, one that comes to mind and pardon me, I mean, I almost don’t want to — I think I’ve said this one on one of the Rheum to THRIVE, one of our meetings. When the pain is — and this is like if the pain is really bad, like usually this is if I was coming home from a shift, to be honest with you, and sitting in the car trying to drive and my like, just from the waist down, basically like my hips, my knees, my feet. Everything is just hurting so much. But I would just repeat to myself, “It’s just pain,” over, and over, and over. And not in the sense of like, “It’s just pain,” like, “No pain, no gain.” I don’t mean that. I mean, like, it’s just pain. It’s something that my body’s feeling. It doesn’t have to be emotional. It’s a feeling that I feel, but I don’t — for me, like I would tie it into, because when we’re dealing with chronic issues like this, you’re like, “Well, what is this pain? Okay, am I headed into a flare? Am I gonna not be able to walk? Am I, you know, am I going to be able to lift my daughter up? Am I going to be able to get up and down the stairs? Lift the laundry?” And it’s not those things. It’s just right now, it hurts. That’s all we’re at. That’s all it is. Right now, it hurts. 

So, as soon as I can get home and deal with it, and you know, because usually it was in the car when I went through this. And I had like, a 40-minute drive usually. So, it was like, I just have to do this for 40 minutes, and then I can stretch and I’ll feel, and I know I’ll feel better. But so, for me, it was, “It’s just pain. It’s just pain.” And I would repeat it. And I would start — I would be crying sometimes, like, but it’s just pain. It’s not the end of my world. It’s not the end of my life. It’s not. It’s just pain. It just hurts. And so, I would just repeat, “It’s just pain,” until, I mean, until it wasn’t there anymore. And I could — but for, I don’t know, for me, that helped me, like I said, take the emotion out of it and be like, it’s just a physical feeling. It’s hurting. It’s gonna go away. I’m not gonna feel — I mean, do I feel this every day? Kind of.

Cheryl:

Maybe not that intensely.

Emily:

Not that intensity, right. And so, that was one thing. The other thing, and I, this is sort of a weird one to stay. But my sister told me this story. And I can’t even retell the story because there’s details that I don’t remember to it. But basically, there’s the story of a friend of my sister’s who met this woman, and she was on like a yoga retreat somewhere. And it was in like, it was in like, somewhere beautiful, right. So, I don’t remember exactly where but like, somewhere, some beautiful place. And so, there was this woman who everyone, they were staying like in this house. People knew who she was, she had had like a ton of children. She did all this work in the village, blah, blah, blah. And so, my sister’s friend said to her, “How do you — how do you get all of this done? Like, how do you do it?” And then — there’s more to the story — but basically, she was like she said, “Ek, ek, ek.” So, E-K, which that’s what she said, which basically just means one, one, one. And so, the nice thing is like, my sister is the one who told me this story, but sometimes I can say to her, like, I’m having a bad RA day, she’ll just reply to me, “Ek, ek, ek.” And it’s like —

Cheryl:

One minute at a time. Yeah.

Emily:

Just do one, right, like one. Just do one. What’s the one thing you’re doing right now? Whatever it is, you know, and you just, and it’s that reminder of like — and that’s been I’ve been thinking of that a lot lately, because there’s a lot of like, for me, it’s like, what am I doing now? Career wise, if I’m not in the ER, what am I doing? There’s all these things, like, just right now, just stay in this moment. This is what I’m doing. 

Cheryl:

I love that. 

Emily:

Those are the two things I say the most, probably.

Cheryl:  

That reminds me a lot of that opening to the Unbreakable Kimmy Schmidt where she’s like, “You could do anything for 10 seconds.” Like, I don’t know if anybody has watched that show, but it’s like, you know.

Emily:

I love it.

Cheryl:

Yeah, and the ‘Just pain’ thing is really interesting. That’s something I say to myself about anxiety to like, because I still am prone to like claustrophobia-induced panic attacks and episodes where I really hate feeling like I can’t escape something, whether it’s like an aeroplane, or an elevator, a carwash, like literally anything; being in a tunnel in traffic, you know, and so I’ll be like, what’s happening is anxiety. Like, it’s just, it’s a story my brain is telling myself. It’s flooding me with chemicals, and I’m feeling dizzy, and I’m feeling like I’m about to go, you know, burst out of my head or something, but it’s just anxiety. So, I don’t know why but that does — sometimes it helps, other times it doesn’t. Yeah, you kind of have to have lots of tools in the toolbox.

Emily:  

No, you know, it’s funny, I was just gonna say with anxiety. Like, I’ve never actually applied it. And I should. Because my daughter has anxiety. And I’ve said to her before, this is your mind telling you a story that’s not true. Like, your mind is telling you like she is swimming now. And so, she’s afraid to dive off the block for races. And I’m like, first of all, you don’t have to. We’ll get to that point. But second of all, like your mind is telling you it’s really high up. It’s really scary. What happens if you enter the water wrong or, you know, whatever. And it’s like, but physically, can you do it? Yeah, you can. Yes, you can. It’s your mind. So, I should use that for myself, too.

Cheryl:  

No, it’s true. It’s interesting. Thank you, brain. I’ll try to — if I’m in the early stages of ramping up, I’ll be like, thank you, brain, for trying to protect me. I know you’re trying to tell me that this is — because it is, I really think, I always tell my husband, I’m like, “It’s like, I would have been the person like going into the cave in the caveman days and be like, ‘Guys, we got to think of a way out. Like, we don’t want to get trapped in here.'” Like, there’s an evolutionary advantage to like thinking of the worst-case scenario constantly, you know. 

Emily:

Yeah, exactly, Absolutely.

Cheryl:

Anyway, so I’m like, thank you, brain. Like, you’re really good, you know, thinker over there and thinking of all the worst case scenarios, you know. And then, okay, last two questions. What is bringing you joy right now?

Emily:

What is bringing me joy right now. 

Cheryl:

What sparks joy?

Emily:

Well, my schoolwork and that community of — because COVID was really hard, working in the ER was really hard during the pandemic.

Cheryl:

I was shocked to hear that. Just kidding, yeah. Oh, and that was what I was going to ask. I kept thinking, what was I gonna ask. Yeah. Okay. Sorry, well, you’re probably sick and tired of it.

Emily:

No, no, no. But just having that community where it meets so many needs for me. Like, it’s intellectually stimulating. It’s something I’m passionate and interested about. It’s, you know, it’s fun being an adult learner when you’re learning things you really want to learn and pursue, and then to feel like that education has helped so much with my own medicine and my own care of the disease. Like, I’ve felt really empowered with that. So, honestly, it’s probably that. Yeah. 

Cheryl:

And what is it — and that you said it’s a master’s in what? 

Emily:

So, the title. It’s a Master’s in Medicinal Cannabis Science and Therapeutics. 

Cheryl:

Wow. Okay. 

Emily:

Yeah. So, it’s through the School of Pharmacy at the University of Maryland. 

Cheryl:

Oh, okay. Wow. Okay, so School of Pharmacy. I’m just writing this down, because I think people will be really interested in that. And then, last one, just a small question. What does it mean for you to live a good life with rheumatoid arthritis? And also, what’s the meaning of life, as long as we have time?

Emily:

Right. You know, I think I kind of go back to like, what I was saying for someone newly diagnosed, like, it’s really just about, just being like, honoring myself, because I think I’ve always been that person that was like, I’ll just bear the brunt of whatever and I can take it; I can take it on. Yeah, like with my siblings and like, I’ve kind of always been that person. Because it wasn’t — it never felt like it was that hard for me. It was like, well, it’s easy. I can just do it. I’ll just — not like, I’ll take on the task, but like, all — I remember, we would like, if we’d be trying to pick out food or something like that, I’d be like, well, I’ll just take whatever’s left. Like, you guys get what you’re offered, you know? And it’s like, for me, with RA, I can’t be the last one every single time. Maybe sometimes I am. But sometimes my kids have to  wait. Sometimes it’s a no, because tonight Mommy needs to take care of myself. So, for me, I think it’s just keeping, not necessarily that I’m always first, but like, well, maybe that I am always first. And that’s it. Like, sometimes, I know, I’m like, okay, I need to do this. But I can do — I can help the kids with whatever. But just knowing that I’m keeping my needs at the top. Because if I don’t manage those needs, everything will fall apart. And just, yeah, knowing that that’s not being dramatic, that’s being honest and real about this disease that I have to manage every day. And not being mad about it, or bitter, or just being like, it’s okay, this is what it is. And this is what I need to care for myself. Like, that, I think, for me, like that’s a huge achievement to not either feel self pity, or guilty, or shame. 

Cheryl:

Yeah, no, it’s true. I absolutely relate to that so much. My disease has led me to have better boundaries. It’s taught me that it’s okay for me to say ‘No’ to things, that I don’t have to say ‘Yes’ to everything. And, you know, yeah, but it can be hard when you define yourself as being that person that’s always reliable, the person that always does everything, the person that’s there for everyone. But, you know, you are only human, and having boundaries is a good thing even if you didn’t have this disease, you know what I mean?

Emily:

I was just gonna say. And it, yeah, it doesn’t have to be just because of RA, but apparently I needed to have a chronic illness to learn that life lesson.

Cheryl:

No, we’re the same. We are soul sisters here. There’s an area in what they call the Oregon Trail generation, you know, the generation —?

Emily:

That’s right. 

Cheryl:

It’s a really unique generation between Gen X and millennials, like, it’s kind of interesting. But, okay. Well, thank you so much. I know we’ve gone over, but we talked earlier that it would be okay to go over. But I’m grateful. And if people want to connect to you online, I’m going to put your links in the show notes. But what’s your Instagram handle?

Emily:

It’s @EPKJacobs. 

Cheryl:

All right. Perfect. 

Emily:

That’s where you can find me for everything. 

Cheryl:

Yeah. Is there anything else you wanted to say before we wrap up?

Emily:

No, just thank you so much.

Cheryl:

I think we covered everything.

Emily:

I know. And I just, you’re wonderful. And I’m so thankful for everything that you’re doing. Because this community needs you. So, thank you.

Cheryl:

Oh, thank you. And speaking about, you know, thinking of not overtaxing yourself or having boundaries, I am trying to like, kind of one of my goals for 20 — first of all, thank you, I don’t want to gloss over that. The worst thing, right, would be to have like, be like, “I have this great idea. I’m gonna make this program,” and have people be like, “We don’t like this,” or, “This wasn’t helpful.” So, like, I don’t take it for granted that people are finding helpful. That’s awesome. And then, but I’m also I’m trying to think about ways to kind of make it sustainable.

I don’t have to necessarily grow beyond what I have right now in terms of like groups and stuff. But I’m like thinking, you know, I did get COVID back in August. And luckily, it was a week I was planning on taking vacation anyway. But I’m like, okay, trying to think like, again, you know, Plan A, Plan B, Plan C, and how can I make this, maybe bring in some more facilitators and make it so that it’s not just dependent on me that way. It’s, yeah, maybe other people can replicate and get, you know, spread to more — have it something — because it’s like, right now, it’s like you just randomly, you know, people find me through like, either the podcast or through like, I looked up the hashtag #rheumatoidarthritis on Instagram and found you. I’m like, yeah, I think I want to figure out how to make it like, you know, available. and known to people. People who might want this are out there who might want Rheum to THRIVE or, you know, more support than they’re getting. So, anyway, so sorry about that. That was about me.

Emily:

No, that’s okay. Yeah, that’s awesome. I’m so glad to hear that. Because it’s helpful for anyone, whether you’re at the very beginning, or you were dealing with it like we have for nearly 20 years. Anybody will get value from it. So, that’s another huge thing. 

Cheryl:

That’s actually one of the most frequently asked questions I get. And I actually have said like, what’s weird because I was concerned about that at first. But first of all, there’s benefits in having groups, like multi-generational groups, in terms of age, and in terms of length of diagnosis. You know, we have some like, the 22-year-olds that are like, “My boyfriend’s being mean to me because of my arthritis.” And then they have, like, they’ll, you know, people in their middle age like, “Oh, he’s not worth it,” you know, like, you have that. You also have the, like, people who have had, like, the feedback I get from people who’ve had it longer is actually sometimes more positive than the feedback when people have it shorter in the sense that they have experienced the pain and isolation of trying to figure it out on your own.

So, for people who just got diagnosed, they’re like, this is great, but like, I didn’t have to have that pain before of not having this kind of support. So, anyway, so that’s what I tell people. But I’m also like, yeah, I mean, like, someone asked me, “Am I going to learn anything in your program that I don’t already know?” And I was like, well, I can’t answer that without knowing everything that you know, like, but I’m like, you know, it is a two-fold. It’s information. And like I said definitely, the mental health and the social, you know, the social relationship parts are things that a lot of people never get any instruction in. The basic pain management techniques, they often do know if you’ve had it for a while, but it’s a community, is not something that a lot of people have had either.

So, anyway, but I should wrap up. It’s early release day for Charlie’s parent-teacher conferences. But thank you so, so much. I really, really appreciate it. 

Emily:

Oh, thank you. Yes, anytime, Cheryl.

Cheryl:

Bye for now!