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comedy chronic illness and copin
Patient Stories, Podcast

Comedy, Chronic Illness, and Coping: Katie’s Inflammatory Arthritis Story

6 months ago
62 min read
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Summary:

Have you ever found humor to be therapeutic in your chronic illness experience? In this episode, Katie Farrell shares her diagnosis journey and the role that humor, acceptance, and support have played in her coping with inflammatory arthritis.  

In this episode, Katie reflects on the crucial role that parental and patient advocacy played in her her journey to a diagnosis of juvenile idiopathic arthritis (JIA).  She also shares her college experience, and discusses the roles that comedy and humor have played in helping her cope.  Cheryl and Katie express the importance of accepting the need for assistive devices, setting boundaries, believing in oneself, prioritizing needs, and having a support system to thrive with chronic illness.

Episode at a glance:

  • Kate’s Diagnosis Story at age 15: Katie shares her journey of being an active child and being diagnosed juvenile rheumatoid arthritis (juvenile idiopathic arthritis) at age 15 after experiencing symptoms for an extended period of time that were initially dismissed as “growing pains”.
  • Advocacy: Katie emphasizes the crucial role her mother played in advocating for her during medical appointments, highlighting the importance of having a supportive network. Katie shares advice on self-advocacy, encouraging patients to set firm boundaries and prioritize their needs, even if it means challenging expectations.
  • Support: The conversation emphasizes community and connection, and the benefit of having someone in your corner to help advocate with you.
  • Coping Strategies: Practical tips are shared, including the use of specialized tools and gadgets designed to make daily tasks easier for individuals with arthritis. Katie also shares her experience with medical marijuana.
  • Comedy: Katie shares the importance of comedy in her life, and how it helps her cope with her diagnosis and spread awareness of it.
  • Accommodations: Katie and Cheryl discuss access to accommodations, particularly in educational settings, such as extended test time and speech-to-text tools for students with chronic illnesses.
  • Living Authentically: Katie advocates for a balanced approach of embracing realism while maintaining a positive outlook, acknowledging both the challenges and opportunities for growth that come with chronic illness.
  • Advice to Newly Diagnosed Patients: Carry on, stick up for yourself, and believe in yourself. Write down three things that made you  proud each day.

Medical disclaimer: 

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

Episode Sponsors

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

Speaker Bios:

Katie Farrell: I’m originally from NH but live in Massachusetts now. I was diagnosed with what was known as Juvenile Rheumatoid Arthritis (JRA) at the time (it is now known as JIA: Juvenile Idiopathic Arthritis). In fact, I diagnosed myself and had to fight just for the blood work. I unfortunately had to learn at the tender age of 15 about how to stand firm and advocate for myself. Some may think that sounds depressing, and it can be, but I’ve learned great coping strategies (including making people piss their pants laughing). I also like to talk about how cannabis has helped me immensely.

Cheryl Crow

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

Full Episode Transcript:

Cheryl:  00:06

I’m so excited today to have my Tik Tok friend, Katie Broder, on The Arthritis Life podcast. Welcome!

Katie:  00:12

Hey, thanks so much for having me, Cheryl.

Cheryl:  00:15

It’s so nice to talk to you in real time. Yeah, as a quick intro, let the audience know, where do you live? And what is your relationship to arthritis?

Katie:  00:27

So, I live in Massachusetts. I grew up in Seacoast, New Hampshire. And my relationship to arthritis is I’ve had it for most of my life. I’ve actually, yeah, about two thirds of my life, if not more. 

Cheryl:  00:43

Oh, wow. Well, yeah, that leads us directly to your diagnosis story or your diagnosis saga. How did you get diagnosed, what age were you? And whatever you want to share about, that would be awesome. 

Katie:  00:55

Yeah. So, to kind of give like a little context, I was a very active kid, I was always outside in the yard. And like, I played so many sports; I played basketball, soccer, softball, you name it. I even got to invite only basketball camps back then. This was at that point, I think, it was an eighth grade at that point when I went to that camp. But my symptoms started actually, at about 11. So, I woke up one morning and my right wrist, I couldn’t move it at all. And my mom kind of freaked out and was like, okay, let’s get you to the doctors. So, we go to the doctor, they do X-rays. And the doctor, I don’t think knew his elbow from his asshole, unfortunately. He looked at that. And it was just blatantly inflammation. The inflammation looking back at it, right. And he said it was my growth plate not sitting in the right place. And my arm wasn’t stable. So, he put me in a cast all the way up to my elbow for six months, which if you know, arthritis, if you don’t move anything…

Cheryl:  02:11

Wow. That’s like literally the worst thing to do. Yeah, I’m sorry. 

Katie:  02:17

Yeah, so that was — but that’s not when I got diagnosed, right? So, they take the cast off, he does another X-ray. I happen to not have inflammation that day, I think because I took Voltaren. Again, I’m like 11, 12, and it doesn’t show up on the X-ray. So, sends me on my way. You know, about two years later, I start going through like puberty, of course, you know, 13 at that point. And I started noticing that, I’m getting swollen now, right. Instead of it just being stiff, like I’m waking up with sausages on my fingers. And it’s just, it’s unbearable. I couldn’t like brush my teeth. Like, I couldn’t wipe myself. I was having major difficulty. And my, like, I was so depressed from it and I was kind of trying to hide it because I felt like I did something wrong to feel that way, you know. I was like, what did I do? What did I do to cause this? I don’t wanna get in trouble. Yeah, to be honest, like, so. I kind of just masked as hard as I could for a couple more months. 

And I couldn’t hide anymore. I wasn’t getting out of bed. I was skipping all my practices. I wasn’t even showing up to class half the time. Yeah. And at this point, like, I’m a freshman in high school. You know, like, I should be having fun. But instead, I’m just so depressed. And I, like, just not wanting to exist, right? And finally, my mom, like, you know, it took her a couple of months to figure it out. But like she saw how sad I got and everything so quickly. And, you know, started really pushing. And she went to hold my hand grabbed my hand and I pulled it back because it hurts so bad. And she’s like, “What’s that?” And I was like, “Oh, I just, like, my hands really hurt.” And then like, we went to an orthopedic doctor, and they were like, “Oh, it’s just growing pains,” right, like, as we all heard back in the day. Oh, I think you’re frozen. 

Yeah, and like my mom kind of just she started to notice that I was getting more and more depressed and just not leaving bed at all. And she came in to check on me and goes to hold my hand. I just like pulled it back, like wincing, it hurt. And then, you know, once again, takes me to the doctor. It’s growing pains, you know? And I then decided to use this newfound invention called the internet. [Laughs] I would go to the library after school. And I would just sit there and look online at all of the scientific articles that were available, and try and figure out what the fuck was going on. Because it was crazy. Like, I had never known anyone to experience that. And then, you know, as a couple of weeks went, by more joints started becoming inflamed, and swollen, and stiff, and I was missing so much school, so much. 

And upon my research, I found something called ‘juvenile rheumatoid arthritis’. And I went, huh. I checked literally every box. And I printed it out, brought it home to my mom. She went, okay. She calls the orthopedic doctor. And she’s like, “What’s the chance of her having rheumatoid arthritis?” And he goes, “No, she doesn’t have it. That doesn’t make — this doesn’t add up.” And she goes, “What? Well, how do you find out?” And he said, “Well, we can run a blood test and do some X-rays.” She goes, “Cool. Do it.” Yeah. And he was like, okay, so I go in the very next day, I get the labs and everything done. 

And that was  — I remember this, like super vividly, it was on a Friday, right? And I remember Saturday morning, even though I was 14, 15, like, I still loved my cartoons, you know, I’d wake up, watch my cartoons, you know. And they’re just like, sitting there, chilling, watching TV and the phone rings. My mom picks it up. And it’s the ortho doctor. And he’s calling to apologize because my rheumatoid factor was the highest he’d ever seen. I was 15. And she actually said, “It’s not me you need to apologize to,” and then goes, “Katie, you got a phone call.”

Cheryl:  07:01

Wow. One, first of all, like, this is Monday morning quarterback, right, but typically, they would send you to a pediatric rheumatologist to dive — like, a pediatric rheumatologist would have looked at those symptoms and known even without doing the tests, most likely, because swelling is not part of growing pains. Like, and having it, you know, affects certain joints of the body is not — the growing pains, it’s just pain. And usually in the larger joints, not like in your fingers. And anyway, so I mean, but it’s more power to them that they at least did come around and apologize. But they’re not even the specialists that’s really trained to identify rheumatic disease.

Katie:  07:45

Right. And it was just so wild going in there because I went in again for more X-rays. They wanted to see my hips too, because actually, I just got my hip, my left hip, replaced five weeks ago. Yeah, I’ve been dying to get that one done. We’ll circle back to that story.

Cheryl:  08:06

Yeah, yeah.

Katie:  08:09

But when I did finally got that diagnosis. Like, it was such a relief, but also like heartbreaking at the same time because I knew that I would have limitations forever, right. I ended up seeing this rheumatologist. For some reason, I did not get referred to a pediatric rheumatologist which made no sense.

Cheryl:  08:30

You were you were in Boston at the time?

Katie:  08:35

So, I was in New Hampshire. I was in Seacoast, New Hampshire.

Cheryl:  08:39

Because there’s been a national shortage of pediatric rheumatologist for a long time. So, sometimes teenagers will go to the adult rheumatologist just ’cause there’s either like a year long waitlist to even get seen by a pediatric rheumatologist. But anyway, sorry. Sorry, continue your story.

Katie:  09:00

That makes a good point though. Because like she took a look at me and like, she goes, “I went to med school with a guy that works at Boston Children’s that’s a rheumatologist,” and she’s like, “You’re too complex. I can’t.” She’s like, “I can’t help you how you need to be helped.” And again, this was like towards the end of the week. It was like a Thursday. I had an appointment with this guy on Monday, the following Monday.

Cheryl:  09:25

Wow. And just little quick context, just for the educational purposes of this podcast, is that something I didn’t know until I delved more into rheumatology is that pediatric rheumatologists are first trained as pediatricians, they’re child body specialists, who then become special, further specialized in rheumatology. Whereas, you know, adult rheumatologist are adult internal medicine doctors who then get to a fellowship in rheumatology, so they truly are apples and oranges; they’re not the same. I mean, again, if you have no one else to go to, a child going to an adult or an adult going to a child rheumatologist is better than nothing. But they are different. And little educational point that now the name of the disease has been renamed from ‘juvenile rheumatoid arthritis’ to now ‘juvenile idiopathic arthritis’.

Katie:  10:23

Right, like a bunch of subtypes in there.

Cheryl:  10:24

Yes. It’s not just a kid having rheumatoid arthritis, it’s a different disease. Okay, but continue your story. You’ll stay linear and then I’ll just sprinkle in, you know.

Katie:  10:38

No, but like it’s so wild how much has changed just in the past two decades, like, and so she ended up getting me in with a friend of hers from med school. And he was really confused how I walked in there, based on my lab numbers. It’s like, how are you walking? And, yeah, my mom didn’t know at the time, but I had smoked a little pot, like in the parking lot before going in there. Like, I snuck away from the car. And I looked at my mom and then I look at him. I’m like, “I’m a little stoned.” He goes, “That make sense, okay.” And then like, moves on. And like, he even told me that he was like, “Look, I’m gonna tell you this off the record, but if it doesn’t, you know, harm your life in any way. And you continue to have reduced inflammation and less pain. Go for it, girl.” Like, it’s, you know, there’s just so many compounds in it are actually anti-inflammatory. And it’s a really good tool that I have in my toolbox. 

Cheryl:  11:44

Yeah, that was very progressive. How many years ago was that, that you got your diagnosis? 

Katie:  11:48

2004, yeah, right around now, actually. It was Spring 2004.

Cheryl:  11:54

Oh, my gosh, this is your 20-year diagnosis anniversary.

Katie:  11:57

It might be. Yeah, like somewhere around here. 

Cheryl:  12:00

Wow. Wow. And I was diagnosed in 2003. So, I’m just a little older than you though. So, I was 21 and diagnosed with adult rheumatoid arthritis. But okay, sorry. That’s so, that was really progressive back then. Because I don’t think even that medicinal marijuana was legal anywhere back then.

Katie:  12:18

Only for cancer patients and they had to be terminally ill, like in hospice.

Cheryl:  12:23

Wow. Wow. So, he was confused how you’re able to walk given the severity of all your numbers. And then did you get put on, like, what was the treatment plan for your care?

Katie:  12:33

So, I started with the previous rheumatologist, the adult one that referred me out she put me on a pretty aggressive prednisone taper which I love her for that. And then, I started with, I want to say it was methotrexate and Plaquenil combo. That lasted a little while but I like kind of wanted to be a little party animal, you know, like, I was like turning 17 and stuff, like 18. I’m like, I’m not gonna — this isn’t gonna work for me. And he was fine with that. 

Cheryl:  13:10

Because methotrexate you can’t have alcohol with it, yeah. 

Katie:  13:13

Exactly. Yeah, like you will absolutely ruin your liver if you go to like, you know, parties when you’re drinking that. Like, even told me when I was on it, he was like, you can have like a sip of wine and that is it. Like, just for the taste, and that’s like once a week. I was like, meh, that’s not gonna really work with the lifestyle I want right, like, right now, you know? And yeah, it was really cool having him as rheumatologist. I actually check on him once in a while and emails, you know, see how he’s doing. He’s still, you know, doing some consulting at Boston Children’s.

Cheryl:  13:50

And so, what do they put you on other than Plaquenil?

Katie:  13:55

So, I ended up going on Enbrel.

Cheryl:  13:58

Oh, that’s what I was on, too. I was on methotrexate and Enbrel, but yeah. 

Katie:  14:01

Yeah, yeah. And I was doing some Enbrel for a long, long time. I lasted a good 10 years. But like the sometimes when you take a medication for a long time, it’s not the getting used to it that I’m going to bring up, it’s the opportunistic infections. Sometimes you got to switch it up, I think, in my theory, like, you know, almost have a different attack at it, right? Like, that way your immune system’s not picking up the same bugs every time they’re near you. That’s just my theory. But I think that’s what happened. I got pneumonia real bad one time. I was in the hospital for, you know, several days and I decided just to switch to different biologics at that point.

Cheryl:  14:56

Yeah, I just had, on Episode 124, I had this immunologist PhD researcher and a rheumatologist researcher. And they shared, they answered a question I’ve been really wondering about, they answer it with research, which is like why is it some people on this — like, I didn’t get any really bad infections on Enbrel. I got a couple of more like yeast infections and bladder infections than I had before but it wasn’t like anything like hospitalization or pneumonia or anything. And like but then there’s other people, like, why is it that so many of us are on the same meds and some people are so immunosuppressed and some aren’t, are so they like, get more infections? And basically, they answered it by saying, like, we don’t know why. 

The answer is that they don’t, the scientists don’t know why, but they can — they said basically, they, over numerous studies over and over again, they always show this large spectrum of which patients get more infections. And you’re right that it can depend on which medication. Like, I got tons of sinus infections when I was on Remicade. And then, Orencia, I got fungal infections. But it seems like each one tends to get, like, and again, who knows, maybe my body had some other factor has been manipulated, you know, and that’s why. But so, anyway, your experience is one that is a common one that you may get some sort of infection and maybe have it more likely on one medicine than the other. So, you switched from Enbrel, sorry.

Katie:  16:30

To — I think I tried Xeljanz was just coming out at the time. Did that for like, I don’t know, like five, four or five years. And then, that one, no infections, right. But it just I developed antibodies, which was super unfortunate because it was my favorite. It was just a pill once a day. 

Cheryl:  16:51

Yeah, that’s what I’m on now. And that’s my fifth one. Enbrel, I started, I developed antibodies to it after six years, but it’s so frustrating to have one that works so well and then have to not be able to take it. So, I’m sorry that happened to you, too. 

Katie:  17:07

And oh, let’s see. And then I tried Actemra which I failed. Orencia, which I failed.

Cheryl:  17:14

It failed you. It failed you. 

Katie:  17:17

Nah, I’m all right. Like, I’ll take responsibility for my actions, my body… No, I’m just kidding. 

Cheryl:  17:22

I was going to say, really? I was like, I don’t think —

Katie:  17:24

No, no, you’re right. It failed me. So, it was Actemra, Orencia, Humira. I went Rinvoq. Hmm, what am I missing?

Cheryl:  17:38

You have a bingo, your bingo board is getting filled. 

Katie:  17:40

I know. I have two bingo cards probably. But now, I am starting Cimzia, which is super similar to Enbrel. It’s a TNF-alpha blocker. So, my current rheumatologist doesn’t like that he graduated med school the same year I was diagnosed, so I’m pretty educated as to my condition. He’s not a fan of that, right. And I do stand my ground on it. And I brought up with genetic tests I had done at Boston Children’s because like when you’re that sick as a kid, like they’ll throw you in any trial they can and asked to get a genetic test on. And I tell them, I started saying I had genetic testing done. And you see his eyes start rolling in the Zoom. And I say something, and I said there’s a genetic mutation, and I can’t remember exactly what gene it is, but the T-cells are overactive in my body, which are supposed to be — they’re good things usually, right. That’s what fights cancer. When there’s too much, it causes inflammation, right? So, I do really well with the TNF-alpha blockers. It’s just genetically, I do really well. But then, he heard that and like, it was weird. He was like, he had like, like an awakening. He was like, oh, maybe I actually should listen to my patient.

Cheryl:  19:06

It’s an evolution for a lot of doctors. It’s like, but it’s, there’s this funny social media meme, I’m guessing you might have seen it. But it says like, doctors are like, don’t — or patients, or doctors are like, “Don’t confuse your googling with my seven years in med school,” and then patients are like, “Don’t confuse your 30-minute lecture on my condition with my 20 years of living with it.” And both are true, like there’s an expertise that going to medical school gives people that is different than the patient experience there. But they’re both very valid. And a lot of people now, you know, are saying, or a lot of providers are saying, you know, patients, especially chronic illness patients are like equal partners on the team. I mean, because we’re the ones that have to live with it 24/7. So, it’s a very complex relationship.

Katie:  19:59

Yeah, and we’re all trying to figure it out together, you know, like, it’s weird for everyone. It really is. 

Cheryl:  20:06

Yeah. Social dynamics are awkward enough and there’s a power dynamic because they have the power to like write that script. Like you could, you can want Cimzia all day long, but they’re the gatekeeper to you getting it, so yeah. So, you know, but I’m glad it sounds like they were open to your influence or your opinion. You got on Cimzia, right?

Katie:  20:27

Well, I did. And so, I started this past week. This is gonna sound weird. And maybe, I don’t know if it’s a placebo effect, but I started noticing like two days after, I was feeling good. 

Cheryl:  20:42

Yeah, it’s not the most — it’s not like the average experience, but it’s not unheard of by any means. I’ve known people who they start Humira. And they’re like, especially, it’s the TNF inhibitors that sometimes are like, a switch flipped. And that’s what I wish I’d kept better records of my own because, you know, 2003, I don’t even have like a digital record of it. You know, it’s like, just random memories of my mom and I, and my dad, too. But I remember it being like an overnight. Actually, I would say the confounding variables that I was also on prednisone at the same time, so I was like, whoo! I’m feeling good. Anyway, sorry. 

Katie:  21:08

I will say I had a bellyache for like 12 hours after, but I just like kind of had some ginger ale and some, like, healthy, you know, some good tummy snacks like yogurt. And then I felt fine.

Cheryl:  21:35

Sometimes, yeah, there’s certain side effects that tend to like go away after your body adjusts to it. So, I’m gently, arthritis gently crossing my fingers, metaphorically, but that it continues working. Yeah, it’ll be really interesting. By the time this comes out, it’ll be a few more weeks into it. So, maybe I’ll put like a little note in the show notes of how it’s, because if it’s working well after two days, I mean, that’s it even better.

Katie:  22:01

Like, the swelling was almost just gone. It was weird.

Cheryl:  22:06

Wow. Oh, I really hope, I really hope that it keeps working well.

Katie:  22:11

I know, right? And I didn’t want to pay for any more joint replacements, it’s expensive.

Cheryl:  22:17

Well, yeah, that was gonna be another, my other question is, you know, what other — other than the medications are like the cornerstone of treatment for most patients, especially ones with like, aggressive, more severe disease, like it sounds like you were diagnosed with, I was diagnosed with, too. Like, what other things have you done to manage it? You mentioned cannabis and then also surgeries. What would you like to share about that?

Katie:  22:45

Yeah, so like, so that first pediatric rheumatologist I had, you know, he had the hip X-rays and was like, “You’re gonna need to get this replaced probably by your mid-30s.” And I actually emailed him, not that like I said anything that was like, “Oh, wow, you’re so important.” I started, like, I had, after him, I had this really great rheumatologist. He retired early. I mean, I think it might be because he has an unfortunate last name, Epstein. I’m not gonna lie. He kinda like looked similar. So, I wonder if he was —?

Cheryl:  23:19

Oh no.

Katie:  23:23

Sorry, Dr. Epstein. But he was the best. And the guy that replaced him, he was just, he didn’t really listen. He just immediately started talking at me, fresh out of med school. So, I went to like, I call them the big box healthcare stores. So, around here, it’s like Optum owns it, so it’s Atrius Health or something. And so, United owns Optum, or I think it’s like the other way around, but it’s a Ponzi scheme anyways.

Cheryl:  23:54

Oh, dear. Yeah.

Katie:  23:55

So, I’m seeing — I had one rheumatologist. She was okay. Like, you know, she listened. And, you know, respected my experience as a patient and it felt like a partnership. But then she decided to stop practicing medicine during COVID which, like, I get it, I get it. It was wild. Like, I get it. Okay, like, newborn baby. She was like, I’m not doing this. 


Cheryl:  24:24

Oh, she had a baby at home. Yeah. 

Katie:  24:26

Yeah. And the woman that replaced her, she was very nice, you know, I almost feel bamboozled. Like, she was listening to me, but she really wasn’t. And instead of having my hip pain investigated by an orthopedic doctor, like I kept asking for, I was sent to pain management which just delayed it so long. So, I was like, begging just to see an orthopedic doctor, and I kept hearing, “You don’t need surgery. It’s not bad enough.” And I kept saying, “You’re not a surgeon, write the referral.”

Cheryl:  25:07

Geez. Yeah, that’s, I’m sorry, that’s frustrating. 

Katie:  25:11

And like, it’s a common experience a lot of people got.

Cheryl:  25:15

Especially when you were told already early on that you were going to need a hip replacement eventually, like, why? I’m confused why that wasn’t taken more seriously.

Katie:  25:25

Yeah. And I developed an impingement also that she had missed. So, that was nice. But, so she sends me to pain management, right? The guy that comes in to do pain management was in the room for three, maybe five minutes. And I have never seen more detailed notes in my chart in my life. Never. He pushed all these, like, it was just wild. He wrote all these notes that like didn’t, just didn’t happen. So, for example, the pressure points for fibromyalgia, he didn’t even touch me.

Cheryl:  26:01

Sometimes there’s this, like, within medical records, they can just click a bunch of boxes. And that, yeah, anyway, yeah, your medical record should always accurately reflect what actually happened in the appointment. And you as a patient have a right to review those notes and ask the doctor to make changes. 

Katie:  26:22

Yeah, so I did that. And then, in addition to that, I called the administration of the that health network and said, I would like to be referred out to Mass General Hospital. We’re gonna get — I’ll go see their pain management. And that was my foot in the door, right, like I knew I needed to get into that research hospital. If I could give anyone that’s diagnosed any sort of advice, a teaching hospital. Go to a teaching hospital. Because they check their boxes, like, seven times. Like, because they’re students, right? Like, they want to make sure they’re doing it right. So, that’s what I would recommend. 

But anyways, I finally got in there, and I ended up seeing the director of the pain management clinic there. He’s like, “Why are you not in rheumatology for this?” And I said, “That’s a great question.” And then, he ended up getting me into rheumatology. Once again, told by — he’s my current rheumatologist, but whatever. He told me, I don’t need surgery. And then that there’s no such surgery to clear out bone spurs. Now mind you, I have, I at that time. Let’s see, I had a nuclear bone scan done. And I have bone spurs in just about every single joint head to toe. It was called osseous activity. And yeah, and it’s just everywhere, because I’ve had I’ve had polyarthritis forever, right. And he kept telling me, I didn’t need it. So, again, I hop on the phone, let’s call hospital administration. 


And I ended up getting into the ortho doctor. It was actually a physiotherapist I saw first, which is what I wanted to see in the first place as well. I was like, that’s going to be the guy is gonna decide if it’s, you know what the best kind of course of treatment is for this mechanically, because it was a mechanical issue, right? Like, I’ve got bone spurs, stopping tendons everywhere. So, he looks at me looks at my records and goes, I really hate to make you have had to pay those copays, but I’m referring you to surgery. And I was like, “No, this is great. This is what I wanted.” He’s like, “Look,” he’s like, “Girl, I’m gonna be straightforward with you. This date of birth with the year 1989 on it, I don’t know how many responses I’m gonna get when I put this out.” Now it’s like, okay, because he wanted to put my case out to some hip doctors within that network that he thought would be best. 

Cheryl:  29:05

Yeah. Because you were young for a hip replacement. But it’s so not unheard of for juvenile arthritis to have hip replacements. 

Katie:  29:14

Right. But so, it’s still seen as like, taboo almost, even though it’s come so far, even in the past, like 5, 10 years. 

Cheryl:  29:24

Interesting. 

Katie:  29:25

So.

Cheryl:  29:26

Well, I know I have a warped view because I, you know, know so many people with arthritis, and maybe it seems more common than it actually is. You know, I’m not talking to a representative sample.

Katie:  29:37

So, one guy responded. I think he sent it out to, like, 30. One guy responded. And oh, my God, he changed my fucking life. So, he was, he was just so like, kind, And like, usually when I used to hear of an orthopedic surgeon I think of like a gym bro that’s gonna blast like the whole, like, Creed while he’s hammering my hip out or something.

Cheryl:  30:09

That is the stereotype online of ortho bros, right?

Katie:  30:17

He was like the complete opposite. Like, he was just like super kind. And like, he wanted to hear my story. And he was just like angry for me. He was like, he’s like, there’s one option. No, no, what did he say. He goes, “There’s three options,” and I go fuck, because I worked in sales for a long time. And I used to say that. That was an open liner for me when I was trying to sell something. So, I’m like, “What are we gonna, what are doing here?” And he was like, you can do nothing. I’m like, I know that one. And then, he was like, you can do everything you already done. Like, uh-huh, let’s just get to number three. And he’s like, or we can replace it. I’m like number three, number three! Yeah, I was like, so excited. Yeah, it was, the recovery has been super smooth so far. I walked with either a cane or a rollator for the past year-and-a-half, right? I haven’t used one since two days after the surgery.

Cheryl:  31:12

And that you said, was it five weeks ago? 

Katie:  31:15

Yeah. 

Cheryl:  31:16

Wow. Wow. I mean, that’s incredible. And I know that hip replacement surgery has come far, long and far, even since I graduated from a master’s in occupational therapy 12 years ago. And back then, hip replacements were like, you had to be, you know, for sure overnight in the hospital, and then you’d maybe go to a skilled nursing. And now, it’s like, they just send you home and depending on the other variables, but it’s in and out. 

Katie:  31:46

You’re going home the next day.

Cheryl:  31:48

Yeah, yeah. Wow. Wow. And, I mean, it’s, this happens like almost every time I do the patient, I hear people’s patient stories. But it’s just, it still hits me how much you had to advocate for yourself, like, every step of the way. Like, what would have happened if you just were like, “Okay, I guess this is what the doctor is saying,” that you’ll just be suffering, you know? 

Katie:  32:13

And I don’t ever want to have anyone know what that is. And like, that’s why I share my kind of what happened is, because, like, you gotta keep pushing. And I know it’s hard. But that like, when you continue to push, you know, like, just persevere. And not even not even push, persevere, like, come out on top, you know, you’ve got this and, like, just keep going, it gets better. It does. 

Cheryl:  32:45

Yeah, and I think, I wonder if you had the same thing. For me, it’s like, the first couple of times you self-advocate, or you try to push for a different outcome than what your doctor saying, you can feel really insecure, because you’re like, well, who am I to do this? Because, you know, they’re the doctor. But if, after you have multiple periods of success, where you’re like, okay, so in that case, I was right to push. Okay, in that case, I was right. And it gives you that confidence that builds over time, because you’re like, whoa. Yeah. Yeah. So, I mean, wow, what a success story of a hip. 

And I think a lot of people, there’s so many things that are paradoxical about having a rheumatic disease. Like you said earlier, with your diagnosis, it was bittersweet. It was, there was obviously scary and sad parts of it, but it was also such a relief, right? In the same way, like a like a lot of people would say, “Oh, my gosh, I want to avoid surgery at all costs, like surgery sounds scary. And it’s like invasive, and I’d have to recover.” But in your case, the paradox is that it actually has given you so much freedom to get the surgery. It’s like, and so, I guess, what does that go to show? That don’t go with your first gut reaction to something, I guess. If surgery sounds scary, maybe consider that it could be actually a positive thing. 

Katie:  34:06

Yeah. And like, it’s really important to find like the right place to get it done. Somewhere you feel comfortable with the doctor, for sure. Like, you literally need to trust this person with your life. If you don’t have that kind of trust with that person, that’s not the right surgeon for you. And I had that with this guy immediately. Like, I knew he was there for me in my corner. And I think that was a huge part of the outcome, as well as quite frankly, my mental health that they talk a lot about, they did like so many questionnaires that I had to do about the state of my mental health, because studies show that recovery slows if you’re depressed.

Cheryl:  34:51

Understandable. Yeah, that’s amazing. They were holistic in that sense of looking at the big picture, not just your hip, but like your body and your mind, and, you know, that’s wonderful. I mean that you, it was the only — it’s almost like the person, the physiotherapist recommended your case to 30 doctors and the only one responded, it’s like not a surprise that that one is the more, you know, big picture person, I guess, because they were willing to do the surgery. Yeah.

Katie:  35:25

Yeah. And it was like making sure that I had like the right expectations, too. He’s like, “What do you think you’re gonna get out of this?” I was like, honestly, I would just like to be able to clip my toenails or go for a walk. Like, not much. Like, just to be able to do little things again that I have been unable to do for so long. 

Cheryl:  35:47

Yeah, well, the little things are everything as anyone knows who that when the little things are taken away from you, you realize that they’re not so little. And I wanted to also delve into your work experience. You did mention that you, you know that you worked in sales. And do you have any tips for people who are trying to navigate — well, first of all, anything you want to share from your personal story? And then, I think, young people who are getting juvenile idiopathic arthritis, or, you know, young adults who get rheumatoid arthritis are like, how am I going to work with this condition? Like, what is it? How am I going to do, how am I going to navigate this? What would you want to share on that? 

Katie:  36:27

So, that’s really tough. Like, you know, I did the thing that we were supposed to do back in, you know, 2006, 2007, which is go to college, get a job, blah, blah, blah, did all that. So, I worked in corporate, but anytime I get a flare up, you know, like springtime, sometimes I get a really nasty one, because it gets really humid around here. And I have to call out for a week, sometimes, you know, like, if you can’t move, you can’t move. And at that time, there was no remote work or anything like that. So, there was no sort of accommodating that, right? I’d get branded as like unreliable or people are like, “Oh, she’s faking it. Because she looks so happy today when she came back,” like, I’m happy, I’m out of my fucking bed, like, thank you. And then like, it would just would kind of perpetuate itself. 

And kind of looking back, the only regret that I have like about it is that I listened to the immature office gossipy stuff. And I took it too personally, that’s like a big regret. Like, because they don’t know, you know, they don’t know. No one knows till they know. Yeah. But it’s definitely a challenge because like I’ve disclosed it, I have not disclosed it. And I’ve been burned both times. Yeah. So, my biggest advice is stick up for yourself and do not back down. You have rights. You have the right to work if you want to, if you are able. And you have the right to do so in a way that doesn’t flare your symptoms.

Cheryl:  38:27

Yeah, I’m gonna link in the show notes to JAN website, Job Accommodations Network. It has a really helpful website where you can search by condition or by symptom what job accommodations you could ask for, and very thorough.

Katie:  38:547

That’s good to know. 

Cheryl:  38:48

Yeah, yeah. And I mean, I’m certainly not an expert in the ADA, Americans with Disabilities Act, but they do, you know, protect people if as long as the accommodation, people with disabilities are, you know, have the right to not be discriminated against in the workplace, as long as they have the right to have accommodations, as long as the accommodations don’t provide an undue hardship to the workplace. And it has to be a certain size. It can’t be like a tiny, tiny little company. Like, it’s 20, is it 25? 

Katie:  39:25

50. 50, I don’t know if they changed, but it used to be 50. That’s where I got burned. One time anyway, but the last company I worked for, they wanted a note every 30 days for me to continue working from home after COVID, you know, quote unquote, ‘ended’. And they wanted a note every 30 days saying I was still chronically ill. And I was like, I need you to take a step back and I need you to look up the word chronic and what that means.

Cheryl:  39:54

Think about the sentence and what you just said. Like, if I need glasses today, I’m going need them in 30 days, like you don’t ask someone to go to the eye doctor every 30 days to prove that they still need glasses, like, what?

Katie:  40:09

And like, yeah, it was just, it was a lot. I ended up leaving, which I’m very glad I did. I applied for disability. And I’m very, again, very glad I did because I wouldn’t have been able to take the time to get this hip replacement done or fight to get this replacement done, right. Like, it took so long. And, like, and it was just a lot.

Cheryl:  40:40

Is it short-term disability or long-term? 

Katie:  40:43

The social security. 

Cheryl:  40:45

So, you did you get approve the first try?

Katie:  40:47

Yeah. 

Cheryl:  40:49

Oh, wow.

Katie:  40:49

I got a lawyer that was super helpful.

Cheryl:  40:53

Yeah, that’s huge. Because I unfortunately have a few people in my Rheum to THRIVE support groups in the last couple years that have applied and even with a lawyer like been denied, I hate to say, or had there be like delays or we need this, we need, you know, all this, this really kind of dehumanizing process of having to prove how sick you are. And was that difficult, just the process?

Katie:  41:20

So, the proving how sick I was, was absolutely not difficult at all. I live in a — so, the approval rate in Massachusetts actually isn’t as high as you think it is. Our more right leaning neighbors to the North have a much higher approval rate than Massachusetts for disability. They’re just super organized. Like, Massholes know how to get it done. Like, we, you know, think about it. Charlie Baker had the best response to COVID in the entire country.

Cheryl:  41:51

Hmm, I didn’t know that. I’m such a West coaster. I’m like, oh, okay.

Katie:  41:55

He crushed it. I don’t love the guy, but he crushed it, you know? And it’s just, we’re organized. And we like to make sure we have our ducks in a row. It’s a weird New England, like, anxiety thing. I think it’s like the Catholic Irish guilt that’s bestowed on everybody, you know?

Cheryl:  42:14

We were talking about Conan O’Brien before we started recording and he talks about that a lot. Yeah, talks about like gets all this positive feedback and the only thing that he can pay attention to is like the one person who didn’t like it. And he’s like, “Tell me more about why you didn’t like me.” Okay, well, that’s I really definitely want to digest like the success stories of applying for social security disability but that’s the fact that you got approved makes it even more, unfortunately, egregious how long it took you to get even diagnosed because it kind of, you know, just is a testament to how severe, you know, things were. 

But so many people with inflammatory arthritis, which is kind of the umbrella word, or autoimmune arthritis for all these like juvenile idiopathic arthritis subtypes and psoriatic arthritis, rheumatoid, ankylosing, spondyloarthritis types is what, like, a lot of people fall into this, they call like the doughnut hole, where it’s like, if you’re really, really sick, you get services. If you’re not sick at all, you obviously don’t need services, and you don’t get them. And you’re like, a lot of people fall into this doughnut hole in the middle, where it’s like, I’m too sick to work full-time, but I’m too well to get qualified for disability benefits. And it’s, it’s just, I know, this isn’t, that’s not really your story. But this is just a heartbreaking thing to have to navigate that middle. There’s just no support there. Unless you, you know, if you’re married, or have a partner that has, you know, fulfils that role for to earning money for your survival, that’s kind of one of the only ways to get, like, like, otherwise, it’s your — 

Katie:  43:59

It’s your own business to, like, you gotta do something. Like, that, who’s gonna — you’re gonna accommodate yourself better than anyone else. Yeah.

Cheryl:  44:06

Yeah, that’s true. That’s a good, that’s a good point. As somebody who has her own business, I’m like, I joke. There’s a lot of like, humor. We’re gonna talk about humor in a second. But, you know, like, I was like, I want to be my own boss. I want to be my own boss. And you’re like, two years into owning your own business, I hate my boss. It’s me. It’s me. Hi, I’m the problem. It’s me.

Katie:  44:30

Do you ever send, like, passive aggressive emails to yourself sometimes.

Cheryl:  44:35

Only in my mind, but yeah, I should actually do it. Yeah. Speaking of comedy. Okay, because this is so cool. Yeah, we talked about Conan O’Brien or I mentioned but, you know, you’ve been exploring a little bit comedy and I just would love to know your, you know, what has the role of comedy been in your patient journey and anything that you want to share?

Katie:  44:58

Yeah. So, I have always been the class clown or the silly goes, if you will, forever as long as I have known. Unintentionally, it just kind of flows from my mouth sometimes.

Cheryl:  45:14

It’s a gift.

Katie:  45:16

Yeah, people tell me I have a way with words when I like insult them. Sometimes it’s kind of like, I have this finesse in — it’s interesting. No, but like, I don’t know. It’s just — so, I’ve always looked at it almost like when you’re holding a purring cat, like it’s got that healing property. Like, hearing people laugh at something just completely outlandish but like observational that I said kind of has that same effect for me, right? So, like, they say not to make comedy therapy, but like, fuck that. That’s what it is for me. It’s not like, I’m not trauma dumping on that. Well, I mean, a little bit, maybe. Like, I may get funny, you know, like, I have this one. 

But I’m like, you know, having RA is not all that bad. You get like a handicap placard. So, I made some pretty good money on Black Friday. And then, it goes on to say, like, I also have a standing doctor’s note to get out of a blow job anytime I’d like. And then I pause for a second, and I like look around. And I’m like, it comes in handy at job interviews. And like, I just like say weird shit like that. Like, it just comes out of my mouth. And I started writing it down. And I don’t know, I’ve always been told to just try it. And I’ve been working with my therapist for like almost a year now. And she’s like, “Girl, you’re gonna do it. Yeah, like, just do it. Do it.” And like, I think it was like a week after my hip replacement is when I did my first open mic, and I did pretty well.

Cheryl:  46:56

Oh, my gosh, amazing. No, I mean, I couldn’t agree more. I mean, I, honestly, in my educational programs, I literally list humor under coping tools like tools in your toolbox, because I’ve never heard that people say that your comedy shouldn’t be therapy. That’s kind of silly, because it’s inherently therapeutic to, I think, to put a humorous spin. I mean, don’t they say like, humor is tragedy plus time, or comedy is, like, comedy is tragedy plus time? 

Katie:  47:26

Yeah. It’s comedy is tragedy plus time.

Cheryl:  47:27

Yeah, humor is not tragedy plus time. But I also, I found this quote that I’ve referred to before, but one of my favorite books is Viktor Frankl, ‘Man’s Search for Meaning’. He’s like a Holocaust survivor. And he said, you know, “It is well known that humor, more than anything else in the human makeup, can afford an aloofness and an ability to rise above any situation, even if for only a few seconds.” They even talked about how like literally in concentration camps in his perspective, like the ability to find some small, you know, literally called ‘gallows humor’, right for people who’ve been in like truly — and I do not know what it’s like to be in that kind of a traumatic situation, fortunately. I have the privilege and never had an experience that. 

But I think that that’s a testament to anyway, to the power — I’m hearing Conan O’Brien’s voice in my head right now. Because he says like, the most boring thing is talking about humor and why, like, he says, the most boring thing is trying to explain why things are funny. Do you know what I mean? Because it’s like, he jokes, it’s like the most unfunny thing is to deconstruct humor. But I think in the context of chronic illness, it makes, to me, it’s interesting. Because if you’re able to make a joke about it, it’s feels, to me, it almost feels like you have some power over it, maybe? I don’t know.

Katie:  48:46

Exactly. It’s like, it’s like, yeah, it’s like I’m showing it that, you know, yes, I live with this, but it doesn’t mean that it has to be bad all the time. You know, like, I went to open mic last night and I’m having a flare up right now. I don’t care. I went because it made me feel happy. And that actually helped, like, kind of calm down a little bit, right, like.

Cheryl:  49:15

Mm-hmm. Do you know Christina Applegate, the actress? I mean, not know her, but know of her. She has recently been diagnosed with multiple sclerosis. And she has done a lot of, she’s done a lot of really funny — she said funny things and I think a lot of people are shocked because they’re like, oh, are we allowed to laugh about multiple sclerosis? And she was at like, it was the Grammys, or it was one of those award shows at the Oscars and everyone stood up and she goes, “Stop, stop showing off.” Like, you’re doing something that I can’t do easily, standing up, you know. And I think it’s so refreshing as someone with an illness because it’s like if everyone just tiptoes around it, it’s almost further ostracizing, you know? Yeah. 

Katie:  50:04

Like, I shouldn’t, like, I don’t want to work harder to be like the cool kid, because we always had to do that. Like, being chronically ill, we had to work twice as hard.

Cheryl:  50:13

Exactly. Yeah, I’m curious. 

Katie:  50:15

To be accepted, you know?

Cheryl:  50:16

Like, what has been the response? I know, you’ve only been doing open mics for a short, short period of time, but what has been the response like?

Katie:  50:24

So far, so good. I did bomb one night when I tried out long form, which is not — so, the long, I can’t read my own handwriting. So, long forms not for me, right. Like, I need keywords. And that seems to work. So, I have like bits that I’ll write out. But then I have a separate tiny notebook where I write the keyword so I know, like, what my set order is. And like, I just get like a lot of feedback that, I don’t know, people are like, “You’re doing great.” One guy last night was like, he sees me come on stage. He’s like, not another white lady. Like, I started talking, he sees me afterwards outside and he goes, “I did not expect any of that out of your mouth. Whoa,” he’s like, “Don’t stop what you’re doing.” He’s like, “Do exactly that. Like, just keep doing that. That’s comedy.” He’s like, “That is true comedy. It’s coming back.” And I was like, oh, shit. 

Cheryl:  51:23

Oh, that’s amazing. 

Katie:  51:25

I was like, thank you.

Cheryl:  51:27

Well, and I, yeah, I just think — well, first of all, that goes to show this, you know, disability is a huge part of diversity that is often overlooked, you know, that you may look like, especially when you when you have an invisible condition, you know, or a not obvious to the untrained eye. Because I was, I would say, like, I can tell because of being an occupational therapist, I can sometimes pick up if someone has a disability, like a less obvious one, like, you know, very mild cerebral palsy or history of juvenile — a lot of people with juvenile idiopathic arthritis, you don’t have as much, but have like a recessive jaw because the jaw, as you develop can be really —

Katie:  52:06

Oh, yeah, if you look up here you, you get like a —

Cheryl:  52:08

Oh, you do have it. Okay, yeah.

Katie:  52:10

I lost a bunch of weight. So, like, I still have like the saggy double chin a little bit there.

Cheryl:  52:17

Not like it, but it’s, like, you know, that hopefully it’s a teaching moment for them. That, like, yeah, that you’re having, you have a diverse perspective or unique perspective because of living with disability from such a young age. I mean, you are probably living with it since 10 or 11, not even identified till you’re much older, which, you know, like, oh, well, sure. I was diagnosis 15. Yeah, that’s 1/3 of your life later. Like, that’s a long time.

Katie:  52:47

You grow a foot in that timeframe.

Cheryl:  52:51

Yeah, like I have a 10-year-old and I’m imagining him going through pain for like five years before getting a diagnosis is so heartbreaking. Like, so, you know, I think that — I don’t know, a lot of people say like you don’t really get over certain things in your life, you just move forward. And I feel like I don’t know if he feels that way. But I feel like I’m never going to really be over — and it was only about a year-and-a-half for me, maybe two years, where I wasn’t being believed by doctors. But that is like such a traumatic experience to be feeling sick, feeling shitty, be going to doctors who have the power to help you and have them say, like, you’re not sick. Like, that was just — sorry, I’ve turned this into my therapist. You know, like, and I was officially an adult when that was happening. To you as a child, I can’t imagine how — I mean, I don’t know if you feel the same way. But maybe you’re just focused on the present and the future. But that’s something that, I mean, yeah, that I still think about today that, like, yeah.

Katie:  53:55

Yeah, that’s definitely something I still think about. But I have like, so I’ve worked on it a lot in therapy over the years. Like, I made it really clear I want to work through that childhood trauma, because that was rough. Like, yeah, like, there were a lot of pieces I didn’t remember that I blocked out, you know, because, like the, you know, I’ve been working through it. And part of it is like doing the comedy thing. And I’m like, fuck yeah, let’s do it.

Cheryl:  54:26

How did you find a therapist, like a good fit with a therapist? So, that’s something people ask me a lot, like how do you find a therapist that gets chronic illness or that’s good for chronic illness?

Katie:  54:34

So, trial and error, quite frankly. I had one therapist that I had for a long time that I should have fired a while ago. Yeah, she was, she made at least two sessions like her sessions. It was really fucking weird. Yeah, people in Massachusetts, I’m telling you, people think we’re like, like the, like, stuck up and stuff. Like, we’re kind of crazy actually. Like, but I actually use Talkspace.

Cheryl:  55:05

Talkspace. Okay, is that like BetterHelp?

Katie:  55:08

Yeah, it’s an app. And, like, you can try different therapists before you find the fit. And you can check off like stuff that you want to work on. And PTSD is one of them. And I was like, I mean, kind of, I was like, it kind of meshes, you know.


Cheryl:  55:27

Yeah, yeah. Yeah. 

Katie:  55:28

So, yeah, I met with one. We didn’t really vibe. And then, I have the one I’ve had for over a year now. And I freaking love her. 

Cheryl:  55:38

That’s, it really is important to know about that trial and error, because I think a lot of people try one therapist, and they’re like, “I don’t like therapy, because I didn’t have a good fit with this therapist.” And it’s like, no, that’s each therapist is so different. They’re trained in different things, you know. So, I think that I always try to give a little shout out to therapy because it took me a long time to go because I was like, I have my own thing of like, it’s not that bad. It’s about to get better. Optimism. Delusional optimism. That was — I love that. Delulu is the solulu. I heard someone say that.

Katie:  56:17

The Gen Z kids are making the best, like, catchphrases.

Cheryl:  56:21

I know, I really want to be Gen Z.

Katie:  56:24

They’re gonna they’re gonna rag on you so bad for that comment.

Cheryl:  56:28

No, I know. I’m born in 1981 so I’m like an elder millennial. 

Katie:  56:33

You are an elder millennial. 

Cheryl:  56:34

Yeah. But really, like, my child, when I really think about my childhood, it really is more like Gen X. I mean, there was a go into the computer lab for like 20 minutes a week in school was like a huge event. And like, I learned how to save things to a floppy disk in high school, I mean, it was totally different 5 to 10 years after that, you know. But okay, so now we’re going to kind of go into the wrapping up section, rapid-fire section. But, you know, earlier you mentioned if, you know, people — your advice to newly diagnosed would be like going to a teaching hospital. Was there anything else you would do differently if you were diagnosed today?

Katie:  57:15

If I was 15 again?

Cheryl:  57:16

I was gonna say, yeah, it’s kind of confusing.

Katie:  57:19

I don’t know. I mean, I don’t think so. Because like, I had, you know, my mom in my corner and yeah, she may be 4′ 11. But she was scary to the doctors sometimes. It’s all the words she would say. Like, she knew the right keywords like NPI number and medical board, like stuff like that.

Cheryl:  57:41

How did she know that? How did she know?

Katie:  57:44

I don’t know.

Cheryl:  57:46

Determination. Library.

Katie:  57:49

We would all fight over the dial up internet to like go figure out what was wrong with me.

Cheryl:  57:55

Yeah, wow. Yeah, I realized that question is, yeah, like, maybe it’d be almost like —

Katie:  58:02

I guess if I was a kid getting diagnosed again. And like something that I wish I had that I didn’t have as a resource is like accommodations in college.

Cheryl:  58:18

Oh, yeah. Such a good point. You are, you have the right to accommodations as a student just like you do on a job. Yeah, what is the accommodation that you think you might have needed, like speech-to-text? 

Katie:  58:34

Yeah. Or even like a little more extended time to do tests especially that had like the written aspect of it. Because like my hands got would get stiff after two minute, you know. And like, you know, holding a pencil, like your knuckles freeze up. I hate it. And I just if I hadn’t known that was like available to me, it would have been, you know, a very different outcome, as to grades-wise.

Cheryl:  59:03

Well, and I think the reason I asked like what specific ones is I realized when I say accommodations, I kind of have a mental schema for what that means, but some people might not even know, like, you know, I don’t think I knew. I don’t think I considered when I went to grad school, I was pretty well controlled with medication at that time, too. So, but yeah, my hands would definitely hurt after the handwriting for, you know, on tests for longer periods of time. I just didn’t — again, I think I had that kind of mindset of like it’s not that bad though. Like, those of for people when it’s really bad.

Katie:  59:36

We gaslight ourselves sometimes. It’s brutal. 

Cheryl:  59:39

Yeah. And it’s hilarious because the people who are gaslighting themselves, whoever with rheumatic diseases, inflammatory arthritis, are like actually suffering objectively so much, you know, it’s like, anyway. What is — you also mentioned, yeah, that this is kind of a similar question, but what words of wisdom would you share with a newly diagnosed patient today. Like, do you have any words of — I mean, I should say not just wisdom but like encouragement.

Katie:  1:00:09

I would say, you know, things — did my headphones just disconnect?

Cheryl:  1:00:19

No, I hear ya. 

Katie:  1:00:20

We’re good? We’re good. It did a weird thing in my ear. Okay. So, that’s why I was like trailing off, like what the fuck is happening here. I guess I’d say, like, kind of I know that it’s super cliche but like keep your chin up, tits out; like, carry on. And don’t be afraid to stick up for yourself in any situation whether that be a family member saying, “Oh, you cancel on me all the time, you must not like me,” like shit like that. Stick up for yourself. Do not, you need to set firm boundaries and stick with them. But boundaries can move, right. So, if you change them, do that. But just believe in yourself. God, that such a — do you remember that poster with like the star from kindergartens, “Believe in yourself.” But seriously, that’s what it is. 

Cheryl:  1:01:19

I like the one with the kitten with, like, one claw on the tree branch, like, “Hang in there, you can do it.” Yeah.

Katie:  1:01:28

But it’s so true. And like a small thing that I do every single day — I’ve been doing this forever — is I write down three things that made me proud that day. That’s like three things that I did, or how I reacted to something, like whatever, something that about me that made me proud. Three things. And it really helps with the mental health aspect of it.

Cheryl:  1:01:56

Oh, I love that. I’m gonna start doing that. And do you have, on a totally different note, do you have a favorite arthritis gadget or tool in your toolbox?

Katie:  1:02:05

I got a whole bunch. I think my favorite one I got recently is this, like, I found it in Ulta it’s this like shampoo brush and you like take the top off and you put the shampoo in the middle. And then it gets it all sudsy, right, and you put the top back on and then it’s like a little brush. It’s got like a bunch of little teeth on it. And you like slide your hand in it and it’s got like a nice fit on there and then you can just get a nice deep shampoo with just going like this.

Cheryl:  1:02:37

I love that. I have a hair scrubber, but it’s like a plastic thing that you put, you slide two fingers around like this knob thing. You still have to — it doesn’t create the sudsy effect. So, I like that idea. Okay, I’m gonna check that out. We don’t have an Ulta in Washington State, tragically. What is, do you have a favorite piece of pop culture, like a movie or book or show that you’ve been consuming recently?

Katie:  1:03:09

Well, as you and I bonded over earlier, I am a Conan stan. And I actually sometimes like to pretend I’m Sona and like —

Cheryl:  1:03:19

Oh, my God, you could so be Sona. You’re totally the North — you’re totally the Boston version of Sona.

Katie:  1:03:30

And then, I’ve been watching The Rookie lately, and the only reason I found out about it is I was scrolling through Tik Tok and Daddy Cop came on as a college student. And I was like, holy shit, it’s Nathan Fillion. And I was like, because I always look at my husband. I’m like, that’s my hall pass. I was like, sweetie, I’m leaving you. The day Nathan gets on that knee, I’m out. We have the same birthday. So, we’re technically compatible. Like, we’re both Aries, like it kind of works. 

Cheryl:  1:03:58

Oh, I didn’t know about this show. I’m looking at as you’re talking. That looks awesome. Okay. Oh, man, this cast is all beautiful. Okay.

Katie:  1:04:08

Right? But Nathan Fillion is from — I’m sure you remember Firefly and Castle and everything. So, I saw that. And I was like, oh, hey, what’s Nathan Fillion doing in a cop uniform? And I was like, we gotta watch this. This is fantastic. And oh, my God. It’s so good.

Cheryl:  1:04:26

That’s wonderful. Do you have a favorite like mantras or inspirational saying?

Katie:  1:04:37

Hmm, I don’t know. I don’t really do, like, mantras and stuff. Like, sometimes I’d like, you know, look in the mirror and kind of go, “Snap out of it,” like that’s a good one.

Cheryl:  1:04:51

Get out of here! That’s New York. Sorry, that’s not Boston. 

Katie:  1:04:55

Cut the shit. Get out of the way.

Cheryl:  1:05:00

I always say that, like, I’m not a tough love, like the tough love doesn’t work well for me, but it actually does sometimes. Again, context is everything. Yeah. Sometimes you just need that kind of, like, coach voice in your head, I’m thinking.

Katie:  1:05:15

Yeah, like, I’d be like, stop feeling sorry for yourself. And then, like, I stop,

Cheryl:  1:05:20

Get it together, get it together. Get it together. What is something other than The Rookie and Conan O’Brien’s new show? What is also bringing you joy lately?

Katie:  1:05:33

I mean, I go to the dog park a lot. 

Cheryl:  1:05:37

Oh, dogs. Yay. Yeah. Do you have a dog, or just go to the park? 

Katie:  1:05:41

So, I have a Chihuahua Min Pin mix. He’s 11. But acts like he’s a puppy. 

Cheryl:  1:05:47

Oh, mine is 5.

Katie:  1:05:49

And he’s completely unhinged. 

Cheryl:  1:05:50

People think he’s a puppy. Oh, that’s so fun. I actually went to the dog park before I got a dog because I just loved dogs.

Katie:  1:05:59

They’re the best. Like, there’s just — and like, they know when you feel crappy. And like, they just automatically just snuggle without you even having to do anything. It’s the best. And then, my cat will come slap me in the face and be like, get over it.

Cheryl:  1:06:14

Actually, that’s like the two inner voices that you need, right? You sometimes need the cat and you sometimes need the dog. The dog’s like, “You’re doing awesome. I love you just as you are,” and the cat’s like, “Get it together. Prove your shit or I’m out of here.” What — this is the last one — what does it mean to you to live a good life and thrive, if that resonates with you, with rheumatic disease?

Katie:  1:06:43

What it means to me is to live in a way where I’m true to who I am. And I’m no longer sugarcoating how I feel for the comfort of people around me. So, just being like, realistic. And then, accommodating my life to my needs, right. Like, not accommodating other people. I’m not doing that shit anymore. We’re accommodating my life to my needs, and putting myself as a priority.

Cheryl:  1:07:16

I’m taking inspiration from that, seriously, because I’m still a lot, I’m really a recovering like people pleaser, which has gotten me some like wonderful places in life, but also can get you taken advantage of or, you know, with your consent, though, that’s what’s so cool. Like, why did I agree to do this? Like, I kind of overcommit myself. I’m like, sure I’ll volunteer for this. I’ll do that. I’ll do that. And then anyway, and then I’m like, why am I so, why am I so over committed? Like, maybe because you said ‘Yes’ to everything. Like, you need to stop being an improv person and saying, “Yes, yes, and,” like you need to actually be, like, I am a human with boundaries. And you can say ‘No’, and the world’s not going to come crashing down. So, thank you. Where can people find you online?

Katie:  1:08:06

So, I’m not very technologically savvy, but I am on Tik Tok as @JointedRAChronicles, you see what I did there?

Cheryl:  1:08:19

I love it. Love it.

Katie:  1:08:21

And then, I am on YouTube. 

Cheryl:  1:08:27

I love that 

Katie:  1:08:28

Is…

Cheryl:  1:08:30

Trauma-tickled —

Katie:  1:08:32

Trauma-tickled Rheumatism. I had to read it, because I can never like keep it in my brain. tasm 

Cheryl:  1:08:38

I just subscribed. Yep. I’m your latest subscriber on my YouTube. Yeah, I already was on — It’s okay. Yeah.

Katie:  1:08:48

No, I just like started posting stuff. I haven’t even put a video up yet, actually.

Cheryl:  1:08:52

Everyone starts somewhere. I remember thinking I was too late. Like, when I started a podcast and 2020 like, oh, my gosh, like I’m already too late. Like, there’s so many podcasts out there. But, you know, it’s never never too late. Yeah, well, thank you. This was really, really interesting. And I think that a lot of people will resonate with, I love your, you know, style of like, you’re saying you’re not sugarcoating it, but you’re also finding, like, maybe not like silver linings, but finding, you know, finding just ways to craft a life that works for you, you know, with chronic illness. So, thank you so much for taking the time. I know it’s, even if you’re somebody who enjoys sharing your story, it takes a lot of emotional and mental effort to do so. So, thank you for taking the time. 

Katie:  1:09:46

Absolutely. Thank you so much for having me. 

Cheryl:  1:09:48

Oh, it’s so great. And for those listening on just the audio podcast, just know that there is also a video version on The Arthritis Life YouTube which is just Arthritis Life, like, youtube.com Was it like — and then @ArthritisLife. Yeah, and there’s also transcripts you can find if you want to pull amazing quotes, like what was it that she said? On the Arthritis Life website, so that’s just, it’s actually arthritis.theenthusiasticlife.com, because that was a domain I got in 2010, theenthusiasticlife.com, which was before I really experienced autoimmune fatigue. And then, I was like, I was able to be so enthusiastic, but that’s a core value of mine is trying to be you know, enthusiastic about whatever I commit to. So, anyway, thank you again, Katie. We’ll talk soon. I’ll see you on Tik Tok.

Katie:  1:10:42

Sounds good. Take care. Thank you.

Cheryl:  1:10:46

Bye for now.

[Ending music]