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Patient Stories, Podcast

Dancing Through Deformities: Christine’s Rheumatoid Arthritis Story

10 months ago
68 min read
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*Trigger warning for this episode*: Between minute 29:00-34:00 there is a discussion of emotional abuse, sexual assault, rape, and abortion. 

Summary*:

*Please see the episode trigger warning below.* On episode 119 of the Arthritis Life Podcast, Christine Troyano shares her rheumatoid arthritis patient story, including how she traveled the world and learned to dance with rheumatoid arthritis.  She also opens up about pressures she experienced as a young person to treat her arthritis naturally rather than with medication, and then shares her experiences navigating different treatments (including medications and surgery) to manage her RA over the past 32 years. 

Christine shares stories of her travels through South Korea and Indonesia, and her passion for dancing. She shares how she developed resilience during challenging situations, from insurance barriers and navigating healthcare disparities between countries, to adversity in relationships. 

Christine explains how dance became a transformative force in her life, where she found a space for self-expression and physical release. Christine and Cheryl emphasize the importance of self-advocacy in managing chronic illness, building a supportive community, and finding joy through the challenges.

*Trigger warning for this episode*: Between minute 29:00-34:00 there is a discussion of emotional abuse, sexual assault, rape, and abortion. 

Video of conversation

Episode at a glance:

  • Living with Rheumatoid Arthritis: Christine shares her experience of being diagnosed with RA at a young age, including the physical and emotional challenges she faced. Her rheumatoid arthritis patient story includes a discussion about how her health challenges affected her identity.
  • Dance as Therapy: Christine discusses the therapeutic benefits of dance in coping with RA, highlighting the community and emotional release it provides.
  • Community Support: Christine reflects on the significance of building supportive networks of friends, family, and healthcare professionals. Christine shares about the support she found within the dance community and the importance of surrounding oneself with understanding and compassionate individuals.
  • Adaptive Strategies: Cheryl and Christine discuss practical strategies and adaptive tools for managing the symptoms and challenges of RA in daily life.
  • Medication Management: Cheryl and Christine discuss the importance of medication adherence and working closely with healthcare providers to manage RA effectively, as well as the challenges of insurance coverage.
  • Self-Advocacy and Empowerment: Throughout the discussion, Christine emphasizes the importance of self-advocacy in managing chronic illness.
  • Finding Joy and Resilience: Despite the difficulties posed by RA, both Cheryl and Christine emphasize the importance of resilience and finding moments of joy and fulfillment in life.


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:

Christine Troyano: 

My name is Christine Troyano, and I have had RA since 1991-21 years old.  My professional experience has taken me from retail sales to classroom & online teaching, child abuse prevention, social services, and, most recently, teaching English as a Second Language internationally.  I love the sun, surf, music & dance & live an independent life-never having gotten married or having children of my own.

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:

**TRIGGER WARNING* 

Hi there, before we start this episode I have a really important trigger warning – this episode includes a discussion about emotional abusesexual assault, rape, e and abortion, between minutes 29:00 and 34:00 so if those topics are triggering for you, feel free to skip ahead, again between minute 29:00 and 34:00

Cheryl:  00:00

All right. Today I have Christine Troyano here to talk about her life story of living with rheumatoid arthritis. So, oops, I already gave it away. But can you introduce yourself by sharing, you know, where you live, and what is your relationship to arthritis?

Christine:  00:17

So, my name is Christine Troyano, and I live in Sacramento, California. And I, my relationship with arthritis is just good and bad. It, you know, some days are good, some days are not so good. I was really, actually, I’ve had arthritis for 32 years. So, in the beginning, I had a lot of swelling and inflammation. And my relationship with arthritis was really bad, because I was always in pain.

 But now, so many years later, it’s more just kind of something that might slow me down. But it I don’t think — well, I think about it every day. But it doesn’t affect me as it used to. So, it’s just there. And I try and make the best of it.

Cheryl:  01:09

Yeah, that’s a really great way of thinking about it. I was almost thinking about it as the analogy of like, background noise, maybe. Like, it’s there, but it’s not predominant, you could still focus on other things. And yeah, I mean, it’s really, I am grateful to have you on the podcast to share, you know, 30 years of experience. That’s just a long time. I’m sure you’ve learned so many things over those years. And I’m just celebrating my 20-year anniversary of having being diagnosed as well.

 But you know, I’d love to hear, just start off with hearing your diagnosis story or, quote unquote, ‘saga’. Like, what were, you know, what were you feeling that led you to try to go to the doctor and like, what did that feel like to actually get that diagnosis at that age?

Christine:  01:57

Oh, boy, I was 21, 1991. Yeah, oh, man. I was 21 in the middle of college life and partying, and, you know, just being social and working. I worked in retail. And so, I was on my feet a lot in retail, you know, I worked in department stores and I worked at places like Bed, Bath and Beyond and things. And I did that for since I was 18, from 18 to 28. And when I was working at one of my last places I worked was Bed, Bath and Beyond. And I was, at that time, I was also in an aerobics class at the JC down in San Diego. I was going to a JC down there. And my feet started to hurt. So, I was 21. I was 20, I guess, beginning, you know, 21 my feet started to hurt. I was wearing you know, LA gear high tops, doing a summer aerobics class, you know, trying to get my credits and everything so I could transfer. 

And my feet started to hurt, and I couldn’t do the exercises. And I didn’t know what it was. And then, I’d go to work and be on my feet all day. And I, you know, working retail, helping people, stocking and all that. And I thought, well, maybe it’s — I don’t know why I thought this — but I thought maybe it’s the air filtration in the system. And then, what — because people were telling me all kinds of things. And I was, I didn’t know what to believe. 

So, I finally went to the doctor. And my GP immediately sent me over to a rheumatologist. He’s like, “I think you have arthritis, rheumatoid arthritis.” And I’m like, okay. And I saw, I went to the rheumatologist, and he’s like, right away, he’s like – oh, you know what, before I went there, I went to a podiatrist. I went to a podiatrist. And the podiatrist wrapped my feet in band, like Ace bandages, and so tight. And they were inflamed, you know, because it was arthritis, right? It started in my feet, that I had to rip those things off so fast. 

I mean, it was like, it hurts so bad. It was like putting a burn into the fire and just, oh, my gosh, yeah, it was awful. So, then, I went to my doctor, and he referred me to the rheumatologist. And the rheumatologist then listened a bit to my story and put me on a high dose of aspirin. He’s like, “Just take all this aspirin, you know, five times a day.”

Cheryl:  04:41

This is the 90’s, right? So, before methotrexate and the biologics, is that right?

Christine:  04:47

Yes. Yes. And he — so, I took like, I don’t know how much aspirin but I took it for like two days and my stomach was just in knots and it was really upset. And I’m like, I can’t do this. So, he immediately put me on methotrexate. 

Cheryl:  05:05

Okay. So, yeah, because I remember that, yeah. Methotrexate came out first, and then the biologics.

Christine:  05:09

Oh, methotrexate and Naproxen. And I could take Naprosyn for a long time before it started affecting me and then I was switched to Celebrex. But when I was doing, Naproxe and methotrexate for years. But I didn’t have real good health insurance, so I couldn’t always afford the medication. So, I had lapses in taking it, but —

Cheryl:  05:37

Is it Naproxen or Naprosyn? Oh, Naprosyn, sorry. I just want to make sure I understood, yeah. That’s like a pain, an NSAID, I believe, non-steroidal anti-inflammatory.

Christine:  05:49

Yes. And oh, and you know what, before that — see, I can’t think right.

Cheryl:  05:54

It’s hard to remember. It’s a long time ago. 

Christine:  05:57

Yeah, it’s a long time ago. So, I also was on gold shots. So, I started gold shots. I don’t know if you’ve ever heard of those, but.

Cheryl:  06:04

Yes, I have that used to be one of my — my great aunt had rheumatoid arthritis.

Christine:  06:09

Yeah. And I would have gold shots once a week in my hip. And that lasted for about a year and a half. That lasted for about a year. And it took a while to start working. But once it started working, oh, my gosh, it was like, I could get up in the morning and not have two hours of pain before it started working. And then, but it would kind of wear off at night. 

And so, by the time I felt good — by the time I felt good, you know, in the in the evening, by the morning, I had to start all over again. So, it was just like, I was so frustrated, you know. So, but I did gold for about a year and a half. And then, I went to the methotrexate and Naprosyn.

 Cheryl:  06:58

Yeah, no, maybe I’m saying it wrong, I don’t know. I’ve heard it pronounced Naproxen. But it could just be in my little circle. And, you know, you mentioned that it was frustrating. I mean, I think it is. I just — I’m trying to imagine what that conversation was like when you got diagnosed? Like, did they explain that this is like a lifelong thing or, like, I don’t think I completely understood that it was chronic when I got diagnosed. That could’ve been my own listening skills.

 Christine:  07:26

Yeah. Well, yeah, you know, I didn’t think about it like that either. I’m like, okay, I have arthritis, you know, what can I do? And I, so I did the goal, then I did the methotrexate. And, but it started with my feet. And, you know, it always happens in both sides, right, in both sides the same time. 

So, it started to my feet. And within a few months, it went into my hands. And then, within a year, it was in my whole body, you know. It travelled all the way around. And so, I just remember calling — I was in San Diego going to school, college, and I just remember calling home going, you know, just screaming because in the middle of the night because my shoulders hurt or because I would just have these just painful spurts, painful moments in the middle of the night and just unbelievable pain that I just couldn’t get through it. I was all alone, you know, going to college and everything. 

So, yeah, if I would have known it was going to be forever. But, you know, you learn to live with it. And I’ve learned to live with it. And but I’ve also, you know, I’ve been on meds pretty much my whole life. I was born with epilepsy. And so, I was on Dilantin and phenobarbital until I was 11 or 12. And then, I had 10 good years, and got arthritis. So, I’ve been on meds kind of all my life and I get tired of taking them, you know, so I quit cold turkey. And because I’m just, I’m just sick of them. And then, the pain starts coming back real hard, real fast, hard and fast. And I have to take twice as much to feel better again, you know, that whole roller coaster that cycle of stuff. So, yeah.

Cheryl:  09:20

Yeah, it’s, it is really, you know, I’ve had a lot of discussions with people about whether — or the, you can’t really, it’s apples and oranges, but experience of having a chronic condition since you were young. Like, when you don’t know any other life versus getting diagnosed older. And there’s like kind of benefits and drawbacks to each. But I imagine, I don’t know what it’s like to live with epilepsy, but you kind of already had certain, a framework in mind that like, bodies don’t always work. 

Whereas for me, it was like, well, I take care of myself. So, I’ll always be feeling healthy until I’m like, quote unquote, ‘old’, you know. But that’s kind of operating under a faulty assumption. But in your case, I mean, it is different. Obviously, epilepsy is different than rheumatoid arthritis. But I wonder if part of you had a little bit of like, do you think you maybe developed some skills around just being a patient? Like, in the healthcare system and managing meds and stuff like that? Maybe that helped?

 Christine:  10:20

Oh, yeah, I knew how to take pills. I knew how to, you know, be on a routine and, you know, take pills three times a day or whatever I needed to. But I also knew how to stand up to my doctor. And I knew how to, yeah, I was kind of rebellious. I think because I had, I didn’t want to admit that I had RA. And I didn’t want to abide by these rules and take the meds and everything. And then, I was frustrated that I didn’t always have insurance. 

So, I couldn’t take methotrexate as I needed to. I couldn’t afford it. And my doctor wanted to put me on prednisone. And I took — I call it pred — but I took prednisone for a while. But that was still when I was working in retail at Bed, Bath and Beyond. And all of a sudden, I noticed the moon face. And I felt weird, you know, just kind of cloudy and foggy and things. 

And then, I was reading about it. And I’m like, I’m not taking this stuff. And so, I never told my doctor, but he would give me refills. And I just wouldn’t get them filled. I just quit prednisone, because I didn’t want the side effects. And I’m glad I did. Because, I mean, I’m not endorsing quitting, because I’m not endorsing any of that. But I’m just saying, for me, it wasn’t right for me. And that’s when I, if I ever have to get a new doctor, it’s like, that’s my one requirement is like I’m not taking prednisone because I just refuse. 

 Cheryl:  11:56

Yeah, and I, like, you know, for the record, definitely do not advise anyone going off meds without telling their doctor, you know, just for your own best interest. I mean, there is a medical disclaimer on all of my podcasts that none of this should be taken as medical advice, this is our personal story. But it’s, this is a learning moment, because it is really common for people to do that, like, and the — it’s also, it’s simultaneously true that you should inform your doctor and obviously have a conversation with them about it so that they can maybe suggest alternatives. 

What they’re trying to do with prednisone is get the inflammation down and give you the best chance long-term at controlling your disease. But if the side effects are so severe, for a lot of people, they are. For me, I already have anxiety. And if I go on prednisone, I’m able to tolerate small doses, but it really triggers my anxiety and I’m more prone to having panic attacks during that time. I just have to, like, mentally prepare myself for that, you know. 

And so, yeah, it’s up to you at the end of the day are the one that gets to make the medical decisions that what’s happening to your body, you know, and if you don’t want to put prednisone in your body, that’s totally a valid conversation to have with your provider.

 Christine:  13:06

Yeah, totally. And, you know, I’ve gone off on my own. And I know that’s not right. And I’ve tried — but I’ve always been a little rebellious, you know, and it’s like, and I’ve been — and that’s one of the things, too. Being on meds so long, it’s like, I’ve kind of learned what my body can and cannot take. 

And I know I’m no doctor, but it’s like, I just, I play with it a little bit more than I should, you know, and I test it, you know. And it’s like, oh, can I take a lesser dose? Can I, you know, can I skip a day? Can I do this and that? And usually it’s not right, but just, you know, I usually, bottom line, you should listen to your doctor, you know, but I’m rebellious.

Cheryl:  13:50

Yeah, I mean, it’s — yeah, and every one, at the end of the day is, you know, you are in charge of your own, you know, health-related decision making. And there’s this phrase in rheumatology now call ‘shared decision making’, which is supposed to be the best practice for rheumatoid arthritis. And that just means – it’s so simple, it’s like, why do we even have this name for it? Like, why is hard? Why is this not already just the standard? Because it just makes sense.

 But it just means simply having very clear conversations between the doctor and the patient about like that or two-way, not like I’m in charge and you’re not, but both having equal weight in the conversation saying, “Hey, look, this is what’s important to me. This is what my body feels like on this or that medicine.” 

(Mid-episode promotional audio for Rheum to THRIVE)

And I think having that openness in that conversation is so important. I remember telling my doctor once, you know, before, you know I said, “Well, the amount of pain and stiffness I have right now,” I had been on a certain biologic for a number of years, but then I had a baby. And my body changed a lot after that. And it was worse. Things were worse but I kept being — it was very confusing because it kept being like well, it this just temporary and my body’s adjusting to postpartum, or is it going about to get better? I don’t want to make any rash decisions. 

And I said, “The amount of pain I’m it, it is not intolerable. It’s tolerable, but it’s noticeable.” And I said, “I don’t — if it’s just this amount of pain, that’s fine. But I don’t know what the pros and cons are of making a change on my medicine.” And she was like, the thing is, we don’t, like, we don’t want you to be in as much pain as you are right now. Because that means that you’re on this downhill trajectory. And the further you get down, the harder it is to get, she’s like, that’s a fire, like, your house is on fire. You want to start putting the hose on it when it’s just one room not waiting till it’s five rooms, you know. 

So, I wouldn’t be able to make that decision without having that information from her and vice versa. She can’t make decisions without knowing what’s important to me, you know. So, sorry. That’s my story. 

 Christine:  15:54

Oh, no, totally. That’s right. That’s right. And I, you know, I actually left that doctor because he was, I was afraid of him. And he was my first RA doctor. And he was just this big military type, you know, that just was intimidating and stuff. And I was 21 and just in pain, and I needed things. And I wasn’t taking the prednisone, and I needed like free samples of — because he was giving me free samples of methotrexate for a while. But he couldn’t always, you know, and so I came in one day, and I’m like, you know, I need something, because I kind of I don’t have insurance right now. And he’s like, “I’m sorry, I don’t have it.” 

And so, I think at that time I left him. And I’ve been to so many, I tried so many different doctors in San Diego, just to see who I was good fit with. And you know, even meeting them in their office, it was like, I could tell right away if we were going to fit or not. And, and then I got one doctor who I started buying, like, well, I started getting into the natural stuff, right, anti-inflammatory diet and supplements and things and he just called it all quack. And this was probably in the later 90s. And so, I left him because he didn’t believe — we weren’t on the same page, you know, right.

 And so, I just — you always, I believe, I always have to advocate for myself. And it’s like, no one else is going to do it for me. And I know, on a certain level, what’s best for my body. I’ve realized I’m very sensitive to medicines, and all kinds. Sensitive, I’m sensitive to a lot of things. 

And I also, I had a boyfriend who was, in 2000, we were together a couple years and he had a best friend that worked at a Whole Foods vitamin store, vitamin shop thing. And he just believed in this guy so much. And it was at the time when the blood type diet was out. And his friend was following the blood type diet. 

And he thought that, his friend thought that my arthritis, I got arthritis because I’m taking the pill, the birth control pill.

Cheryl:  18:14

Oh, my gosh. Whoa.

Christine:  18:18

Yeah. So, my boyfriend’s name was Jeff. His friend at the store’s name, his name was Dale. And Dale just thought that my arthritis was caused by taking the pill. And we know it wasn’t. 

But, you know, at this point, I spent, both of us spent hundreds of dollars on like 30 different supplements that I was taking that I ended up taking twice a day when I was with him. And I stopped my meds. And my doctor didn’t know it at the time. And this was a real good doctor that I trusted that he, we fit very well together. 

And he’s like, when I came into my next appointment, he’s like, “Why did you stop taking —” because I was taking Enbrel all the time. And he’s like, “Why are you not taking the Enbrel?” Like, because, you know, my boyfriend, his friend and blah, blah, blah. And he’s like, you bring your boyfriend in here and I will talk to him. And, you know, I will tell him that you need to take your meds, you know, that you need this stuff. It wasn’t that I didn’t want to but he, my boyfriend didn’t want me to because he thought they all knew everything.

 And so, I started — he never went in. They never talked. They didn’t know each other. But I ended up hiding my Enbrel injections in the fridge, right, because they have to refrigerate it. And I ended up hiding the injections in the crisper like under all the food and everything, and I would sneak the shots twice a week because I didn’t want Jeff to know, my boyfriend. But I needed them because I was in pain, because the 30 supplements, twice a day, at $400 a month was not helping. It was helping a little bit but not significantly.

Cheryl:  20:06

No, and I’ve talked about this a lot on social media. I want to do a whole podcast about it, about this very fascinating ‘Natural is better’ bias. It’s a very strong cognitive bias that can lead people to such detrimental decision making around their inflammatory arthritis, because it’s seen as, well, natural methods don’t have any negative side effects, but the medicines do. 

But if the if the natural doesn’t work, and you can you suffer irreparable — the joint pain that you, or the joint deformities that can occur if your disease is uncontrolled, you cannot turn the clock back on it. 

So, you know, so I’m not, I’m not lecturing you, I’m lecturing anyone listening. It’s not a one — people seem to look at them as like — first of all, they’re not either/or. You can do natural methods alongside medications, if that’s your, if that’s what feels right to you. But right now in 2023, there is so much data over, over, and over, and over again about the efficacy and safety at the population level of these medications. 

And the lifestyle methods that are most likely to turn the dial on your inflammation, they are not nutrition or supplements, it’s exercise. And that’s again not to say that any one individual might be better served in their own body doing diet and supplements but then exercise in randomized control trials when they try all these different things. It’s over and over again, it’s consistent engagement in movement. It doesn’t have to be going to the gym, it can be a dance, as I know that you like. 

And I’m going to put the link to the 2022 Integrative Health Guidelines for the management of rheumatoid arthritis because it’s the first time a national association in the United States has, for rheumatology, put out Integrative Health guidelines. So, therefore, specific for — they say in the title of the document — it’s for ‘Guidelines for Exercise, Rehabilitation, Diet and Additional Integrative Interventions’. 

And they have a chart and it’s like, you know, they’re actually against any formally — and this is based on 500 pages of research that’s not biased, or it’s not like drug company funded things. So, these are, you know, real studies and formally defined, against any formally defined diet other than Mediterranean and against dietary supplements specifically for rheumatoid arthritis. Also against chiropractic. 

So, these things that seems, like, seems so the harmless can do a lot of harm, especially because you are deciding not to take the medicine, you’re risking your disease going uncontrolled. Sorry, that’s my little — what is it called — soap box. I almost said spoon box. Soap box.

Christine:  23:04

It’s true. I was told at one point when I had stopped taking meds that — because I was just rebelling, and I was done — they’re like, the doctor said, you know, “Anytime you’re in pain, your disease is getting worse,” right. So, it’s like, not to over — I don’t over medicate. No way. I take the least amount possible, to feel good, and to keep my body from going further downhill than it has already. But over the 30 some years. But I was told by a doctor a long time ago, it’s like, if you’re in pain, then that’s when you’re getting worse, you know, so you need to keep your meds at least level to your pain level so that deformity doesn’t happen or you can keep your well-being as long as possible.

Cheryl:  23:58

Yeah, yeah. And I think the only, you know, everything becomes a grey area the further you get down in rheumatology. And the one only caveat, I would say to that with current pain science is that if the pain is from central sensitization, then that central sensitization is when your brain is overly responding to a small stimulus so that you perceive there is a chronic degree of pain in a certain area of your body, but it’s not actually due to an ongoing disease process like rheumatoid arthritis. 

So, you could have, you know, if you have rheumatoid arthritis, you can have some of your pain being from the disease itself and that actual inflammation that you have to control, but some of your pain could be in that chronic category. It’s a little bit more similar to like fibromyalgia where you then have to retrain your brain, that actually movement and moving this area of my body that my brain is telling me is in pain can actually help retrain my brain that there is no active stimulus hurting me at the moment. 

It’s very, that’s where it gets really tricky is like how much of your pain is chronic versus actually from your disease. And I don’t have the best language on this because you’re like, chronic pain is different than saying I have a chronic illness like rheumatoid arthritis that is causing pain. You know, chronic pain is usually the example they give us like, you have an accident, like I had a car accident and whiplash injury to my neck. My neck still hurt six years later, but the tissues, all objective signs are that there’s nothing there. It’s my brain has become overly sensitive to that part of my body. Because it’s like high alert, this area got hurt, protect it at all costs, you know? 

 Christine:  25:40

Yeah, yeah. That’s interesting. 

Cheryl:  25:43

But yeah, the goal is obviously to get your pain as low as you can. So, you can, like you said, have, you know, the best quality of life possible to you. And so, I mean, I am grateful to you for sharing your story about the, the boyfriend and boyfriend’s friend who pressured you because it’s so often the ones closest to people that pressure them to, you know, do the natural is better, or, you know, have like conspiracy theories around ‘big pharma’, quote unquote, and stuff like that.

Christine:  26:12

Yeah. Can I pause for a sec? 

Cheryl:  26:13

Oh, yeah. No problem. So, yeah, and I think, like, I was kind of trying to form my thought here. But you know, as a young person, there can be so many pressures on you from, especially from your dating life and relationships. I remember, I’ll just share really quickly, one time I was dating somebody who I was telling them, I have to be really careful about infections, and all infections. I’m on Enbrel and methotrexate. And I have to be careful about getting an STD or getting, I didn’t want to get any infection. 

So, I was really careful about, you know, sexual, you know, protections and stuff like that. And he was like, he was not that, you know, excited about wearing a condom and stuff. But I’m like, well, I don’t, I — you have a choice. You could not be sexually active with me and not wear a condom, or you can — I had to be able to advocate for myself. 

And I know that that’s something a lot of young people go through. What were your relationships, you know, is there anything you’d want to share from your relationships, you know, as a young person with rheumatoid arthritis?

Trigger Warning 2:  

Cheryl – this is a reminder of the trigger warning, for the next 5 minutes, there will be a discussion about sexual assault, emotional abuse, rape and abortion, so if you’d like to skip those topics feel free to skip ahead to minute 34:00

Christine:  27:19

Yeah, well, with arthritis, I dated. I dated a little bit but I, you know, I wasn’t a serial dater or anything. I didn’t always have to have someone. And so, I was raped at 18. So, I really wasn’t into dating much, you know, and so.

Cheryl:  27:48

I’m so sorry to hear. That’s so sad. I’m sorry. 

Christine:  27:52

That’s okay. I’m, you know, I’ve worked through it. But when a special guy did come around, you know, I was nervous. I was nervous because of my past and with the arthritis and everything. And then, so I didn’t date a lot. But then, when I met Jeff in 2000, he, and we did the whole vitamin thing, and me hiding the meds and everything. You know, he didn’t want me on birth control. So, I wasn’t on anything. And he, we decided to do like the rhythm method and things and try to do it naturally and all that. And that’s difficult, at least for me, I found that very difficult to do. 

And so, I got pregnant after four months of being in a relationship with him. And I was, within two years, I was pregnant three times by him. And I had three abortions in that relationship. Because yeah, not that, I mean, I’m pro-choice. But I never thought of it before until all that, you know, because it never happened to me. I didn’t really have to think about things like that. 

And but the first time was, you know, he blamed me and everything, you know, because he thought that I did this on purpose and everything. And I know, but I knew that I couldn’t be pregnant. I couldn’t have a surprise pregnancy because with arthritis, you have to plan for things right. You’d be off your meds and everything. So —

Cheryl:  29:41

Yeah, methotrexate especially. Yeah.

Christine:  29:43

Yeah, yeah. So, he, you know, went with me and everything the first time and then the second time, I told him and he was upset again. But the third time we were traveling. And I ended up in the emergency room at the hospital in Southern California, because I was taking so many vitamins, I had an ectopic pregnancy. And that was dangerous. 

And the doctor said, “You have no business taking 30, 60 pills a day,” you know, supplements a day and stuff. So, it wasn’t exactly a healthy relationship. But, you know, yeah. So, that’s how that ended. But I’m single/ I’ve never been married. I don’t have any kids. I’m not — I’ve been a teacher. So, I get my kids filled by teaching. And I was never one who always wanted kids. So, I was okay with not having kids, you know.

Cheryl:  30:54

Yeah, yeah. That’s just, that’s a lot to go through as a young person. I’m just, I’m grateful to you for sharing it. Because, again, anything that you share on this podcast, I can guarantee someone is relating to, you know, or someone feels like, wow, I feel seen, you know. And I can, you know, I’m just, I’m sorry that he wasn’t more equipped to be a support person for you at that time. I’m trying to be generous with my assumptions — what is it — attribute, yeah, attribute positive intent or something. I’m trying to be a good person, but I actually don’t like him. 

Christine:  31:37

No, I know, I would call him emotionally abusive. 

Cheryl:  31:40

Okay. 

Christine:  31:40

Overall, you can say that, too. That’s okay.

END TRIGGER WARNING PERIOD

Cheryl:  31:43

And you deserve better. Yeah. And, you know, and I, you know, I just, it’s too bad that these bad things seem to happen to the nicest people, you know? Yeah. 

And I mean, you mentioned, I also wanted to talk about work, because you have had such an interesting work life, because you mentioned loving kids, as a teacher and not necessarily wanting to have your own and I totally get that. I always wanted kids. And it is so much harder when you have one than you think before you do. Even though my child is perfect. He, literally, he’s amazing. 

But I’m just, I’m like, It’s absurd to me that people pressure people to have kids because I’m like, you should not do this unless you really, really, really want to do this. It’s just a lot. But so, you are a teacher. Can you tell me a little bit about like, what it’s been like, you know, being an ESL teacher and traveling and managing your arthritis alongside all that? 

Christine:  32:45

Oh, well, yeah, the arthritis really bothered me, because I spent like 10 years in retail in the beginning and being on my feet, I couldn’t do that much anymore. But then, I went into teaching. I actually started teaching for my 8th grade English teacher. She was, after I came back, I came back to my hometown. And now that I was older, she was now teaching kindergarten and not 8th grade English. And so, I taught in her kindergarten class and that’s where I decided that I wanted to teach. 

And so, I started subbing around town and everything. And then, I decided, I dance. And my dancer friends were travelling and going all over different places, and they work and travel and everything, and I wanted to do that. So, I got on an email list and eventually, someone contacted me and said, “Well, we’re ready. We want — we’re gonna hire in China or South Korea, where do you want to go?” I was like, South Korea. And because they pay more, and I just felt more comfortable going there and everything. 

So, I went. Within four months, I was off to South Korea, teaching English as a second language and to Korean kids that were age 5 to 14 or so. And yeah, and it was great. I was there three-and-a-half years and I got to see most of Korea and I even went close to the DMZ. That was one of the most interesting events, interesting excursions I did. And — just a sec.
Cheryl:  34:35

No worries. 

 Christine:  34:38

So, we went to the DMZ, which is a place that you can’t go on your own. You have to go on a tour. You have to bring your ID, your passport, and we spent the whole day there. And it was just one of the most interesting tours that I went on while I was in Korea. It was very — I was kind of emotional. But very just heavy to be there and a little bit scary because, you know, North Korea is right there. And it’s just, it’s right there. But it was one of the best things.

Cheryl:  35:11

Just in case someone doesn’t know what DMZ stands for. It’s the Korean demilitarized zone, right?

 Christine:  35:16

Yes. It’s the peaceful space between North and South Korea. That people leave, you know, notes for their loved ones. And so, many of the stones and the writing on stones there is in Chinese because they were originally, they originally spoke Chinese in Korea before a man created the Korean language. 

So, I spent three and a half years there teaching at three different schools. And then, I decided that each school I went to was located further and further north. And the further you go north, the colder it gets. And so, I was in Seoul my last year there and I just decided that the winters are too cold. The windchill factor is huge. And waiting outside for the bus and different — I didn’t drive, you know. So, I had buses and subways and things to take, but it was just, it was too cold in the wintertime. So, and slipping on the ice would have been real dangerous. 

So, with my more fragile body, so I came home and put it all together and I signed up to go — I looked on the map, and I found all the tropical places, you know, and I put that in to where I wanted to go. And Indonesia came up. So, I decided to go to Indonesia. Indonesia was the first country to come up. So, I went there and spent seven years there.

 Cheryl:  36:46

Wow. How did you manage your medications and all that there, in Indonesia and Korea? 

 Christine:  36:53

Well, in Korea, it was great because I had excellent insurance, and I was still taking Enbrel and I could get my Enbrel injections there. And there was no. there was no issue. I think I paid like $100 a month or something as a copay. I mean, versus, you know, what it costs now if you had no insurance, right? 

And so, I was well taken care of there. I had an interpreter at this hospital and everything. So, everything was great. Indonesia, they don’t have such a system. And they have, they do have Enbrel there, but it would have cost me my whole paycheck per month. So, and my insurance only paid like $300 a year. $300 A year. 

And my medications I was taking — so, I had, um, I had a doctor. I had a couple doctors in Indonesia, but you know, I worked and it was the times that they were available conflicted with my work schedule. And so, I didn’t see a doctor very often. And I knew, you know, in Indonesia, you can go into a pharmacy and get, I could get Celebrex and methotrexate over the counter. 

Cheryl:  38:13

Oh, wow. 

Christine:  38:15

So, I didn’t need a doctor. I knew what I needed to take. So, I just every month spent about $200 — $200, yeah, about $200 a month taking, buying my Enbrel — no, not my Enbrel, methotrexate and Celebrex. And I went to the same pharmacy so they got to know me and everything. 

And it was no big deal, you know. And so, it wasn’t a big deal. It wasn’t too bad not having insurance until my hands started to go funny. You know, my hands. My hands when I first got arthritis, they started drifting very early on. But I swear I could feel them drifting when I was in Korea, like in the shower. I just, it was a weird, the weirdest feeling. I could feel them moving. And then, I just became really aware of them. And then, my students were aware of them in my classrooms. 

And they’re like, you know, if I had a new class, you know, they’d be — I’d say, “Hi, my name is Christine Troyano, and I’m your teacher.” And they’d say hi, and then they’d start talking to each other and pointing, and look at her fingers, look at her hands, you know, and start laughing at my hands. 

And so, I think that, actually, I became more self-conscious of my hands. Just because I was in the classroom and these kids were, you know, they were great kids, but they were just curious, you know, and why are your hands like that.

Cheryl:  39:49

What would you tell them?

Christine:  39:51

Oh, sometimes I tell them the truth, that I have arthritis. And sometimes, I’ll just say, you know that I’d make up a story, you know, I’m a monster or something and, you know.

Cheryl:  40:05

Oh, for like the little ones.

Christine:  40:07

For the little guys. But for the teenagers, I would, I’d write, you know, ‘rheumatoid arthritis’ on the board, and then I’d tell them and so they were actually kind of interested and yeah, so, I mean, they were surprised. My first, always my first day in the classroom was like, you know, “Why are your hands like that?” and, “What’s your religion?” right. So, because they’re all, you know, most of them are Muslim over there in Indonesia. And when I tell them, they’d be like, [gasp] because I’m nothing, you know. And so.

 Cheryl:  40:42

Yeah, yeah. Yeah.

 Christine:  40:45

They’re like, “What’s atheist?” Oh, and then they translate, translate in their own language. Someone would tell them, whoever, you know, spoke English better. And they’d be like, oh, that will take them a minute to sink, have it sink in.

Cheryl:  40:58

Yeah, I bet. I mean, totally. Yeah. And was it — so, it’s called ulnar drift, the deformity associated with rheumatoid arthritis. You know, it’s that the knuckles get big, and they drift over to the, quote unquote, ‘ulnar side’ which is the pinky side. Was it pretty painful?

Christine:  41:19

Yes, in the beginning, and probably up until the last, you know, 5, 10 years or so. It was painful because they were swollen. And there was inflammation. And anytime I would, you know, there were certain foods that I knew affected me. And that was wheat, gluten, sugar, salt, and dairy. Those are the five things that are just —

Cheryl:  41:44

The things that all taste really good. 

Christine:  41:46

I know. So, yeah. So, I knew as soon as I would eat wheat or gluten, you know, I would just blow up in like 30 minutes, you know? 

Cheryl:  41:55

Oh, that’s fast. So, I tried gluten free. And sadly, it didn’t do anything to my arthritis. But it does help my stomach bloating. I used to be very bloated all the time. I thought that was just what my body was. But I knew what was uncomfortable. But when I started gluten free, it was like my lower GI tract was just like, sort of like we’re not inflamed, we’re not inflamed anymore. We’re feeling more comfortable now. 

So, anyway, sorry. That’s my story. But it’s always, you know, it’s worth a try to a lot of people to try some of these eliminations. I’ve tried dairy, too. Definitely dairy causes some GI problems for me, but none of them seem to cause a direct joint symptom for me, but many others, for rheumatoid arthritis, they do find, like, for dairy, like the ones you listed are like, objectively some of the most common.

 The only other one I say is like fried food or processed food for flareups. But sorry, because we’re talking on your hands. So, they were, you were noticing that the knuckles feeling —

Christine:  42:54

Oh, yeah, right. And they were really big. I actually, I have a before and after picture, because I’ve had surgery now. So, they were really big. And my hands were more like this, you know? And so, this is ’23. In ’22, March ’22, I had left hand surgery, left hand surgery. And they were perfectly straight for like, a day. Or, you know, for a while, maybe, you know, a few months. But because I didn’t have, I wasn’t on the right meds. Because I wasn’t on any infusion or any, you know —

Cheryl:  43:36

Biologics. The Biologics class of medicines, which are like the most targeted.

Christine:  43:42

Right.

Cheryl:  43:42

Yeah, either injection, or infusion except for Xeljanz, which is the one I’m on which is an oral tablet. 

Christine:  43:48

Right? Right. And so, because I was doing my own thing, and I didn’t have any biologics or injectables, I know that that’s — or that’s my, it’s my belief that I caused my arthritis, my hands, to do what they’re doing. So, it’s just — so, I blame myself a lot and blah, blah, blah. 

But my doctor, my surgeon, he did the best he could with the knuckles I have left. And he’s like, you know, I’ll make him straight, but there’s no guarantee that they’ll stay straight. So, because your arthritis is so aggressive, so active. I’ve never been in remission, so yeah. So, I mean, I’ve had the surgery, but this is how they are today. And, you know, I don’t know.

Cheryl:  44:36

Was it the knuckle joint replacement? 

Christine:  44:40

Yeah. Can you see on there? 

Cheryl:  44:42

Yeah. Okay, I see a little scar. 

Christine:  44:44

Yeah, so I have a scar on both of my hands. It’s just right down there.

Cheryl:  44:49

And, you know, and it’s you mentioned blaming yourself and I think that, you know, self — you know, understand, learning from things in the past that you would make different choices today.  If you had, like, there’s one thing to be said for saying, “Wow, I know more information now. And I would make a different choice if I could go back.” B

ut also, it’s also important to counterbalance that with self-compassion to be like, you know, I did the best I could with the information I have. And it’s very common for people who’ve, you know, made a certain decision that they, in rheumatoid arthritis, whether it’s going all natural without meds, or whether it’s jumping into too many meds, and then being super immunosuppressed and having to have like a liver transplant. I mean, there’s just so many things that you could say later, like, “Oh, gosh, I wish I wouldn’t have done that.” 

And it’s hard. Or it’s, I find it important to be self-compassionate, you know, to myself, because there’s definitely, like, things that I regret as well, you know, yeah. And so, all we can do is learn from them, right?

Christine:  45:54

Yeah, yeah. And I am doing acupuncture now. Acupuncture has really helped my elbow because I have, my elbow, like, froze back in 2018. And I was in the grocery store, and I had a basket, a little basket. And it, I put it on my arm and all of a sudden, my elbow just froze up. And my elbow went from being swollen and always hurting to the pain is gone now. The pain left, but now it’s just I can’t open things right. And it’s like, I don’t have that — I can’t drive. I can’t. But I haven’t driven, really, since 2010 since I started traveling. So, driving, me on the road isn’t probably a good idea. 

Cheryl:  46:37

Where physically are you right now? You’re in Sacramento you said?

Christine:  46:40

Sacramento. 

Cheryl:  46:40

Okay. Okay.

Christine:  46:42

Yeah, I know. It’s like —

Cheryl:  46:43

Is it a very pothole-y city?

Christine:  46:45

No, not really. 

Cheryl:  46:47

Oh, okay. 

Christine:  46:48

But yeah, I know. But, you know, I’m kind of glued to my computer and stuff. And, you know, I teach online, I do everything online. But yeah, it’s — I would just, if I were to go back, you know, to Indonesia, or wherever that doesn’t have meds. I’m looking for work right now. 

And so, I want to get back out there in the world and travel. I haven’t done that since ’21 because of the pandemic and everything else and, and their hand surgeries and all that. And, but I think I’ve decided that I need to have a job that is based in the US so that I could have good insurance because I, that’s my number one qualification or a standard, you know, that I need to have.

Cheryl:  47:37

Non-negotiable.

Christine:  47:38

Non-negotiable. Yep, exactly. I have to have insurance because I have to be able to get my infusion or meds or whatever, you know.

Cheryl:  47:46

Mm-hmm. Yeah, that was, that has been a huge priority for me as well. And then, you know, when I got married, it was fortunate that I was able to be on my husband’s insurance, you know, during a few times when I was in between jobs, or it’s just, it’s too, it’s unfortunate that your insurance in the United States is tied to either your employment or your spouse, you know, or family, if you’re younger. It can be up to now, like, I was on my parent’s insurance for a while. But back then, I don’t think it went all the way up to 20. I think it goes to 25 or 26 now, which is really nice.

 But I mean, it totally makes sense. It’s like we have — we don’t have the luxury as people with rheumatoid arthritis to go with — or if we have a choice in it, I mean, you don’t always have a choice, right, obviously. But that makes — it’s hard. I mean, if you’re somebody who likes to travel, and that’s part of your values, it’s like your values are conflicting, like, I value travel and exploring the world, but I also value having the health insurance that enables my health and function. So, these are conflicting, you know, values that maybe, who knows. Yeah, you can get around it by maybe doing like smaller trips.

Christine:  49:00

Yeah, I don’t know. But I don’t go small. I go big or go home.

Cheryl:  49:06

Oh, no. Get hooked up with a lifetime supply of meds and maybe you get a — I know at least, I don’t know, this is maybe totally not helpful. But when I was in China briefly, I volunteered at a clinic, an occupational therapy and physical therapy clinic. And interestingly, it seemed that there — and the clientele was, the kids were mostly expat kids, American and British kids. 

And the company, I don’t remember for sure, but I thought that maybe the teachers are actually like US-based teachers that have to be — that just are physically in China, so maybe they got paid.

Christine:  49:42

Well, yeah, there are teachers in China who come from all over. And they are considered expat teachers. And depending on if you’re with the government, then you can put your kids in international schools or if you’re in the military, they go to international schools and things. 

And yeah, it’s amazing. I’ve never done that. But I’ve taught some kids online that were in international schools in China. So, while I was in Indonesia, I’ve done a lot of things. But I worked two jobs, right. I had this classroom teaching and then I worked online teaching Chinese children, or kids in China. So, yeah, so I got to experience them. 

And right when COVID hit, and it was just, it was an amazing, yeah, so I was right there. And I was glad that I knew how to work online. Because before all the teaching went to online schooling.

Cheryl:  50:42

You are ahead of the curve. Yeah,

Christine:  50:44

Totally. But it’s hard. 

Cheryl:  50:48

Oh, sorry. No, I just want to make sure I don’t forget to ask you about dancing as well. So, like, those are two like amazing things about your life, I would think, is all your experience teaching and all of your experience dancing, how did you get into dancing? And what are what is the kind of dance that you do? 

Christine:  51:07

Dance, I do 5 Rhythms dancing, and it’s a silent moving meditation. It was created by Gabrielle Roth in the 60s. And over time, she created these maps, these five maps of movement. And it goes from — I cannot think right now. Well, I’ll tell you that later. 

But yeah, there’s five maps. And so, and these five maps can apply from everything to work, to family, to death, you know, to lifecycle, to partnership, to work, all these different things, you know, and so —

Cheryl:  51:54

Oh, I just saw — I found it online, I think.

Christine:  51:56

Okay. Gabrielle Roth.

Cheryl:  51:58

Flow, staccato, chaos.

Christine:  52:00

Lyrical, stillness? Yeah.

Cheryl:  52:03

What’s stillness like? I’ve never experienced that. No, just kidding. 

Christine:  52:05

That’s a hard one. That’s the last one where you’re kind of like, you’ve done flowing, you’ve done, you know, staccato, you’ve done chaos, and you’ve done lyrical. So, you’re all up and light. And then, stillness is coming back down to, like, kind of not yoga, but kind of just peacefulness to yourself. And just like resting, and slower movements, and more like closure to the dance. 

Cheryl:  52:33

Okay. Okay. Cool. 

Christine:  52:35

And yeah, but I found it when actually during my turbulent time with that ex-boyfriend of mine. A friend of mine had done it. And so, I looked the guy up, and I ended up taking a — the guy who did it in Sacramento also lives in a place called Nevada City, which is like an hour from me. And I went to the free intro at the food co-op, and never looked back. And I’ve been dancing since like 2004 or so, 2000. 

And so, that’s why I moved to Nevada City because he lived up there. I was dancing in Sacramento, I was dancing in Nevada City. And I just fell in love with the tribe, the dance tribe up there. And I loved it, in a little small town and stuff. And so, I moved to Nevada City for a few years before I moved on again. But yeah. And did workshops, met people from all over the world, and we danced on Fridays and Sundays and it’s amazing.

Cheryl:  53:41

It’s so funny because I started swing dancing in 2004. And I’ve traveled a bit. And actually, South Korea was on my list of places to go swing dance because Lindy Hop, the kind of swinging I do, is really big there. I’ve just, so far I’ve only traveled to — I’ve danced in Shanghai actually, but, and then all around the US, but I did not dance in South Korea yet. 

But I, dance, for me, has been really an important physical release. But it’s not as maybe philosophical — or what’s the word — as what this sounds like. Like, especially the kind of meditation. I think it’s a meditation that I have to be present when I’m dancing, but it’s not like I am not consciously thinking about it as like a moving meditation, you know? 

Christine:  54:30

Yeah, it’s funny because, you know, we could dance in a room with, like, between 50 to 100 people, you know, on a Sunday especially. And you dance either by yourself, you can dance in partnership with one other person, or you dance as a community you know. And there’s no rules, or there are some rules but it’s, but most of all, it’s you just like dance like nobody’s watching. That’s what we say. 

Dance ugly, you know, and dance like nobody’s watching and you can, you know, just because you’re dancing with one person doesn’t mean you have to dance with them the whole song, you know, you dance for a second, you move on, you know, whatever feels comfortable. 

There are times when a song comes on or a person or you’re going through something, you know that you might cry or laugh or get angry, or it’s just a personal experience, very personal. There’s no performance. It’s not an audience thing, you know, it’s just an internal thing. And it’s a great tribe. I love them. But yeah, but I started it and it really helped me with movement, and that kept my joints kind of going, you know, and because it really helped me not be so stiff. 

Cheryl:  55:45

Yes. And there is now, we have the scientific evidence for that, that like motion is literally lotion for stiff joints, right? Patients are like, yeah, we noticed that. 

Christine:  55:57

Yeah, yeah. And yeah, it’s true. And it’s like, it’s not just, you know, I used to not go out on the dance floor. We dance barefoot, we dance, there’s no drugs, no alcohol, you just bring water or something and a sweater. You dress in layers, right? 

And then, I used to not feel comfortable enough going out on the dance floor alone, and dancing to the warm up music or something as people arrived. But I got over that and then started loving being like the first one there and having the whole floor to myself and moving around and everything. And yeah, it’s my thing.

Cheryl:  56:39

That’s so beautiful. Do you think it’s helped you, like, cope with the ups and downs?

Christine:  56:45

Yeah. And yeah, because those friends, I mean, yeah, I’ve got my friends from school or whatever. But those dance friends are just lifers. You know, I mean, we’re just — I haven’t lived in Nevada City since 2008, but I still go back up there to dance and stuff because I’m just I’m like an honorary part of the community still, you know, because I just love them. 

And I’ll go up there. We used to have rockin’ New Year’s Eve parties, you know, just, you know, 12, like, yeah, you’re dancing and stuff, right. It’s like, from 5pm to midnight, you know, and everybody brings food and we just do it.

Cheryl:  57:23

Yeah, that’s how I met my husband, is through the dance community. So, there’s all so many different, like, different subcultures for different dances and I know there’s like the salsa dancing community, the swing dancing, tango, and now there’s this, there’s Zumba. There’s so many different kinds. 

Christine:  57:39

Ballroom, and yeah. Everything. 

Cheryl:  57:42

 Yeah, I forgot ballroom. West Coast Swing is a totally different thing than East Coast and Lindy Hop. I do the East Coast Lindy Hop. 

Christine:  57:49

I like East Coast. I know West Coast, but I know how to do East Coast. Yeah. 

Cheryl:  57:54

Yeah, that’s my favorite. And I really like New Orleans style jazz, you know, I was just listening to the Louis — because it’s December when we were recording this. And I was listening to the Louis Armstrong and Ella Fitzgerald Christmas album. So, yeah. Classic, they don’t make them like that anymore. 

Christine:  58:13

But I used to — oh, go ahead.

Cheryl:  58:15

Oh, no. Please, go on. Yeah.

Christine:  58:16

Oh, I was just gonna say my mom worked at — she had a co-worker tha, she worked at a bank. And they both worked at the bank. And her friend retired and she went into teaching dance. And she, so I took ballroom dance lessons from her; she taught ballroom dance. And that’s actually how I met Jeff through — because his dad was her partner to teach dance. And but, so I learned, you know, West Coast, East Coast Swing, and night club two-step, and the waltz and all these different dances, you know, and then I would do, she would have a dance once a month in our little area and invite all of the students, and we’d dance and everything, and I’d take tickets and stuff. And so, yeah.

Cheryl:  59:05

Well, I think I mean, this is gonna be like a meta commentary on this episode already, as we’re in it. But, you know, I think nowadays, people diagnosed in the year 2023 often are not told that, you know, you have to go — we’re so lucky to have these meds now because it’s no longer inevitable that you’re going to have these, the deformity of the ulnar drift. 

And it’s posed as if ulnar drift and deformities — I have deformities in my toes, very slight ulnar drift, very, very slight. I’ve been wearing my compression gloves right now, but it’s not very noticeable. But like deformities are the worst possible thing that could happen to you, right? A lot of times they act like your life is gonna be over, if you don’t — and I don’t want to make light of it. Like, obviously they hurt and you can — actually my toe deformities don’t hurt that much. But anyway, it’s the hammer toes, you know.

Christine:  1:00:01

Yeah, yes, I’ve got one that’s, like, kind of broken.

Cheryl:  1:00:06

Yeah, mine is just like curling up, it’s like a little caterpillar here. And, you know, it’s not to make light of it, but just say that your life is not going to be over if you have a deformity, right? 

It’s kind of what I’m, like, you’re talking so beautifully about dance, that you’re able to still do so many things with it. That’s, to me, something that I feel like is very hopeful. I don’t, I mean, that’s just something that hopefully people listening can maybe reflect on, too.

Christine:  1:00:37

Yeah. And, you know, I used to dance, we dance barefoot. And, but you can also dance with dance shoes, like Capezio dance shoes, or something. And, but no heels. And, you know, it’s just comfortable. And I’ve danced with dancers for a long time. And actually, I prefer wearing them because I have more energy, right, with dance shoes on. 

But I had foot surgery. So, I’ve had hand surgery, but my first surgery was foot surgery, and I had all 10 of my toes made look to look good. And because they didn’t look good. And I remember my podiatrist saying, you know, if I wouldn’t have known you, and just looking at your foot X-rays — back when I was 21, 22, when I had this done — no, I was 30. And he’s like, “I would have thought that you were an 80-year-old person because your feet X-rays look like an 80-year-old,” and I had it done in 2000, 2001. 

My first foot done was done the night before 9/11. I was sleeping on the couch because I couldn’t go upstairs because of my feet surgery. So, I just come home from surgery. And then, I woke up to 9/11, right, a phone call from my sister. So, yeah. So, and then I had the other foot done like a year later. But, yeah, he looked at my X-ray just like, “If I wouldn’t have known who you are, were, then I’d think your feet, you’re like 80-year-old lady.” And that was when I was 30, you know? 

Cheryl:  1:02:11

Well, and I think it’s an interesting comment. I mean, I think there’s knowledge now in, at least, and I’ll use an analogy from like the back pain community, like, where there’s an understanding now that the imaging does not match up with the symptoms, right? 

That some people have back X-rays or imaging that looks horrible, and they have no pain. And there’s people who have excruciating pain, whose back X-rays, you know what I’m saying? Like, sometimes it also, I mean, in the case of, again, just to be very clear, the goal is to maintain your normal joint range of motion and to prevent deformities through aggressive, you know, treatment, and that’s why I take the full dose of methotrexate and my medications. But it’s to assuage your kind of maybe additional worry that a deformity means that I will be screaming in agony and won’t be able to move at all, that’s not the case necessarily. 

You know, deformities are more complex than people would imagine. But that must have felt so weird. I mean, did you feel like he was trying to — what do you think he was trying to get you to think when he said, “I would have thought,” like, that basically, to let you know that maybe — was he complimenting you for functioning so well? Or was he trying to scare you? I don’t know, I’m curious.

Christine:  1:03:28

Oh, no, he said it in a positive way, you know? Yeah, I didn’t take it wrong. I didn’t take it negatively. He’s just like, he’s like, you’re amazing, you know, I mean, the way you’re functioning, because your feet look really good, you know? And yeah, and so now it’s been you know, 23, 22 years. 

And he said, you know, you might have to have this redone in like 10 years, but I haven’t had anything redone and yeah, they don’t look perfect, but they’re not as bad as my hands but, you know, I’ve got a big space here and they overlap here and whatever, but I can wear shoes and I don’t wear heels but I never could wear heels.

Cheryl:  1:04:12

l never liked heels even, you know, even before I got rheumatoid arthritis. I was not a heel girl. I just did not like, I just found them uncomfortable. 

Christine:  1:04:20

No, I had every —

 Cheryl:  1:04:21

When I played soccer, I’ve used my feet greatly. But yeah.

Christine:  1:04:24

Oh, yeah. In retail I had every pair of flats. I had one style of flats I wore in every different color, like red and green and blue and, you know. And then, once I got arthritis, I couldn’t fit half my foot into the shoes I used to wear. It just —

Cheryl:  1:04:43

Well, that is one reason to avoid the more severe foot deformities is that you could fit into more shoes easily.

Christine:  1:04:49

Yeah, yeah. But they’re, you know, it’s like they just swelled up.

Cheryl:  1:04:55

Mine do on the aeroplane especially. I’ve been wearing compression socks and that helps. But I’ve noticed that a lot. I had to get my — I have the giant Hoka’s, those Hoka sneakers.

Christine:  1:05:04

My mom does.

 Cheryl:  1:05:05

Yeah, yeah. They’re so great. I’m like, I love that these are in fashion now, like gigantic shoes that look like —

 Christine:  1:05:11

Yeah. Oh, they’re totally in fashion. I know. And I have my big tennis shoes and stuff and and actually I have a pair of like Teva sandals, right, for summer. But I, my mom laughs at me because I have to put my little pinky toe out of the slip because it rubs.

Cheryl:  1:05:33

That’s so funny. I know, my little pinky toe kinda, it’s gone rogue. It’s in the opposite direction that you would think for the — the ulnar drift on the pinky finger goes out, my pinky toe is going in. It’s like, like, you’re saying, I’m a rebel. It’s a rebel. It’s not following the pattern. But I just realized for time, I want to make sure to get — I love the rapid-fire questions. So, do you have any — and it doesn’t have to be, like, one word. It can be, I’m just going to ask a couple questions in succession. Do you have any best words of wisdom for newly diagnosed patients?

 Christine:  1:06:15

Listen to your body, and follow your doctor, you know, work together. Work together. Because it’s so important for you to listen to your body and do what you feel is right. But also, listen to your doctor and work together to find the best treatment solution because I was rebellious and I paid for it with pain and deformities and things. 

So, that’s what I would say biggest things. And if you have pain, you know, it always usually happens in both hands or both feet to start. See someone soon because the sooner you get in, the better. 

Cheryl:  1:06:56

Yeah. And, you know, you are at a disadvantage versus people diagnosed now, in that, you know, all of the medications weren’t even available to you when you first got diagnosed, it was the gold shots, and they weren’t really that helpful. 

And it’s in a way, it’s like you had this experience with like, okay, well, this stuff isn’t — like, it was, it’s hard. It would be a bit hard for you to understand at that time how much these aren’t just like different options that are equally effective, like the biologics or methotrexate are like a gigantic step forward. Or, but when you’re the patient, you don’t have access to all that knowledge. Like, you don’t — anyway, sorry. This was for your rapid-fire, but I just like to complicate.

Christine:  1:07:36

But it’s true, it’s true. And like I have drivers, you know, I have medical transportation that takes me to appointments. And one of them, you know, they started all of them today on Remicade, or, you know, on a biologic. And it’s like, I had to go through all the other stuff first and then end up there. And so, they’re much less deformed than I am. 

Cheryl:  1:07:57

Yeah, yeah. Even me getting diagnosed in 2004, no, 2003, sorry, 2003. That’s one of the reasons I don’t have as strong of a deformity. The deformities, for me, only started after I had my son because my body really just freaked out postpartum. I was following the recommendations at the time from 2013, 2014, which already have changed as of now for staying on your medicine during pregnancy. 

But anyway, do you have a favorite arthritis gadget or tool in your toolbox? It’s okay, if you don’t.

Christine:  1:08:30

Well, I was trying to think about that. And I, you know, I would just say most recently, I have that little eyedrops squeezer thing. It’s like the best thing because my eyes are getting dry, you know, and all this, and I have used that. And so, because I’m using that, I mean, it’s easier to use, and I can put drops in easily. I use the drops as I should, as directed, instead of, you know, ugh, kinda doing it. 

But I would also say, an eye opener, you know, because I have a hard time opening things because my elbow but just arthritis. And I wouldn’t say it’s a, it’s more of a hack if you can’t open things to use like a fork to pop the bubble, to pop the seal and then open it.

 Cheryl:  1:09:19

My friend was — she doesn’t have arthritis, but she is an occupational therapist who specializes in helping people with disabilities. And she was recommending something I had never thought of. It makes so much sense using, like, needlenose pliers to get those off. Like, that orange juice, the top of that orange juice or whatever else. Like, oh, I just usually stabbed it with a knife, you know, like, yeah, it sounds a lot better.

Christine:  1:09:41

Yeah. Or I use a knife or a fork and just tap really hard on top, you know. Or knock it on the ground a little bit, you know, because that works, too.

Cheryl:  1:09:52

That’s so funny. No, other people were telling me they use their teeth. I’m like, ooh, that scares me. I don’t want to use my teeth. Yeah. Do you have a favorite book, or movie, or show that you’ve been into recently?

Christine:  1:10:04

Oh, I like to watch, we like to watch Found. That’s really good, on NBC. And that, and we have a — I think it was on Netflix or Apple or something. Lessons in Chemistry.

Cheryl:  1:10:20

That book broke my heart. Oh, I know. I need to watch. Ah, Brie Larson is incredible in everything she does.

Christine:  1:10:29

She was amazing. She is amazing. And I think it just finished but yeah, and what else was I watching? I don’t know. There’s so many. There’s so many. But yeah, I’m not a big reader. But I do like the shows.

Cheryl:  1:10:43

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

Christine:  1:10:52

Dance like nobody’s watching. And that, you know, that I can do it, right. You can do it. You can do it. And this too shall pass, right. It’s like, like, just keep going. Keep going. Yeah, just keep swimming. Yep, keep going, right? 

Because it’s, I’ve sat around a lot. And I’ve been in my darkness. And I’m still kind of in my darkness. And I’m trying to get out of my darkness. And I just know if I just make that one move. But it’s procrastination. And just busyness holds me back. And yeah, I just know that it’s better on the other side, you know, if I can just get to the other side. 

Cheryl:  1:11:40

Yeah, yeah, that’s definitely, that’s powerful. What does it mean to you to live a good life and thrive with rheumatoid arthritis? That’s a hard one.

Christine:  1:11:54

Live a good life? Well, I teach because I travel, or do I travel because —? I teach to travel. I teach to travel. And you know what, once I’m out there in the world, nothing holds me back. It’s like, if I want to get somewhere I’m going to get somewhere. I’m going to figure it out. I’m going to figure out the route, make my connections, you know, do what I need to do. B

ut protect myself, you know, and do it wisely. But I take risks when I’m out in the world, in travelling internationally. You know, here, I’m in a little bubble in my mom’s house. But out there, it’s like, I’m just living life. Doing my thing and living life.

Cheryl:  1:12:38

Wow, that’s awesome. Is there anything else you wanted to share with the listeners before we wrap up? There’s a lot. But.

Christine:  1:12:48

I know, I know, where do I start? Let’s see, you have another hour? Just that it’s hard. You know, the last 37 years have been hard for me. But, you know, it’s kind of strange to be on the other side of it. And knowing that one doctor actually said I was, I had burner arthritis now. But then, the new doctor I went to said, no, you need an infusion. You’re not done flaming up.

Cheryl:  1:13:18

What is burner — I’ve never heard of that. What’s that mean?

 Christine:  1:13:20

Burner means that you’re, you have no more inflammation, like it’s burned out. 

 Cheryl:  1:13:25

Oh, okay. Okay. 

Christine:  1:13:27

It’s burned out. But then — he wasn’t very good. And I found a new doctor who she’s like, “No, you need infusion.” So, I started on Orencia a year ago, and I would just say it’s a long road, but get on something good. Talk to your doctor. And work out a plan that works for both of you. And then, live your life, live your best life. Live your best life. Do what you want to do, you know, as long say you can.

Cheryl:  1:14:00

Yeah. That makes a lot of sense. Well, thank you so much for taking the time to share. I know it’s always, you know, even for someone like me who loves to, like, barf my life story out to the Universe constantly. It still takes — its emotional labor, and it’s time. And it is emotional, even if you’ve kind of sorted through this stuff to some degree already. So, I really appreciate it.

 And I’m going to put your links to where people can find you. And you said you’re not like extremely active on social media. But I’m going to put your links that you shared in the show notes, which you can find on the Arthritis Life website, along with the transcript and the video of this conversation if you’re just listening on audio. And you have a website that your friend created for you, Truly Raw Stories, which I love that. 

And yeah, I just, I appreciate your time. And hopefully, maybe we’ll do a part two, because we have so much more to talk about. But we’ll sign off for now. Thank you so much.

 Christine:  1:15:01

Okay, thank you, Cheryl. Nice talking to you.

Cheryl:  1:15:04

You too. Bye!