Video of Conversation – Includes childhood photos and photos from the time of diagnosis / immediate year afterwards
Summary:
I could not think of a better way to celebrate my 20 year rheumatoid arthritis diagnosis anniversary and the 100th episode of the Arthritis Life Podcast than to bring my parents on! In this episode, we share our memories of my diagnosis story, which covers roughly the year 2001-2004.
🛑Trigger warning: discussion of eating disorders (I did not have one but was accused of lying about causing my weight loss and hiding an ED) 🛑
This episode includes a discussion about the profound confusion we all experienced when I went from a healthy, robust student athlete to having a “mystery illness” that doctors keep insinuating is “just anxiety” (or an eating disorder). We also share how we lost faith and trust in some doctors after experiencing medical gaslighting, yet we also found hope in the competency and empathetic care of other doctors (particularly in rheumatology).
We share our mixed reactions to the diagnosis of rheumatoid arthritis, and my parents open up about what it’s like to have a child get sick who’s a young adult – not a kid anymore but not a fully independent adult either.
My parents also share their advice to other parents of children or young adults who are sick but not yet diagnosed, as well as their best advice for newly diagnosed people with rheumatic diseases. This is a must listen!
Episode at a glance:
- Introduction to my parents and discussion about my early life (healthy, active lifestyle, no drugs or risky behaviors).
- Cheryl’s Early diagnosis story (2001-3): Going down the gastroenterology path. We initially addressed systemic symptoms (stomach issues, eye issues and fatigue). The gastroenterologist did many procedures (including an endoscopy, barium swallow and pH manometry) then said nothing was wrong other than “the relationship between mom and daughter” (insinuating we were too close or perhaps both “too anxious”). He then did a gastric emptying scan and diagnosed me with gastroparesis (slow motility – a form of dysautonomia) but still said nothing else was wrong.
- My parents dilemma of whether to believe me or the gastroenterologist and others who accused me of having “nothing wrong” and just being a hypochondriac: how they chose to believe me despite the medical gaslighting from docs; how it was confusing that i could just get sick out of seemingly nowhere, it just didn’t make sense. My dad knew I didn’t have an eating disorder.
- 2003: Hiring a concierge doctor who initially thought it was just anxiety, but eventually in summer 2003 once my joints were hurting more she ran more bloodwork and preliminarily diagnosed me with RA.
- Immediately after diagnosis – memories of the first trip to the rheumatologist and starting meds: relief, confusion, a whiplash from feeling not believed to feeling believed and that this is very serious; discussions about whether to start medications or not; my mom opened up about realizing she could advocate for me but wasn’t the expert in the medications;
- Cheryl returns to New York for final year of undergrad and experiences medicated remission for 6 years – end of “phase 1” of her RA journey, which became more bumpy and complex after that first remission ended.
- My parents advice to others: My parents share their best advice to other parents who may be in the position of advocating for their children
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:
Peggy & Guy Crow
Peggy and Guy Crow come from the Seattle, Washington area where they raised their three children, the middle of which is Cheryl, the Arthritis Life Podcast host!
Cheryl Crow
Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
- Links to things mentioned in episode or additional listening
- Cheryl’s Arthritis Life Pages:
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl: 00:05
Today this episode is going to be a little different than most of our episodes because this is the 100th episode of the Arthritis Life podcast. My mom gets the award for listening to every single one. Yes, and I have my mom and dad here with me today. And we’re going to be walking down memory lane, some happy memories, some not so happy memories of my initial diagnosis journey, which happens to be this summer exactly 20 years ago, also, which is —
Guy: 00:37
Amazing.
Cheryl: 00:38
Amazing. And I finally figured this out. I kept saying I just diagnosed at age 20, but it was actually 21. I was already 21 in 2003. I got diagnosed right before my 20th — or my 22nd birthday. So, yes, for some reason, I kept thinking, anyway, because I was, it was so close to my birthday, I’d gotten confused. So, today, we’re going to talk about, we’re going to go into that story. But first, I’ll start with just the question I ask everyone in the beginning, is just can you tell me really quickly where you live, and what is your relationship — and your name — and where you live, and what is your relationship to arthritis?
Peggy: 01:17
My name is Peggy Crow. And I am Cheryl’s mom. And my relationship to arthritis is through Cheryl. So, I guess that’s all I’ll say for now. When I first — or I should add, when Cheryl was first diagnosed, I had the same reaction that many, many people do. I just thought, “Oh, good. Oh, phew. It’s just arthritis,” you know, because we spent years and years trying to figure out what was wrong, and like so many of your listeners, I’m sure, have done. And so, my relationship to arthritis has broadened, as we’ve learned about what Cheryl’s experiencing.
Guy: 02:02
Yeah. My name is Guy Crow. I’m Cheryl’s loving father. And she’s an awesome, awesome daughter. And we’ve had a wonderful life together. I’m Peggy’s husband, course. Okay, I gotta admit, when I first heard that Cheryl had arthritis, I thought, “Wow, well, you know, things could be worse.” She could have cancer, and she could have — and a lot of other things. But to be quite honest, I did not understand that she had the difference between normal or just regular arthritis, and rheumatoid arthritis. I had no clue. And my loving wife knew that and did not inform me how bad, how serious Cheryl’s ailment was. And so, I was happily going along and thinking, “Oh, good, well, Cheryl is going to be fine. She’s going to outgrow this little arthritis thing. And everything’s going to be wonderful.”
Cheryl: 03:15
It sounds like mom didn’t quite know.
Guy: 03:18
Yeah. And so, we’ve, it’s been a real journey, and [sighs] not a particularly pleasant one, so.
Cheryl: 03:30
Yeah. Well, and I appreciate you both taking the time to chat today. We brought — I brought my emotional support dog, Teddy, who is trying to insert himself into the conversation here, which is probably — the kind of Audio Recording 101 is not to include your animals, but I couldn’t.
Guy: 03:46
No, no. He’s too cute.
Cheryl: 03:50
But yeah, that is, I think, a lot of people listening who have had that experience of people saying, “Oh, it’s just arthritis,” it can feel very minimizing. But at the same time when you first get diagnosed, if you don’t know any better, that’s kind of what everyone thinks. So, I totally get that. And yeah, I mean, I’ve talked so many times about what a relief it was when I got diagnosed, and we’re gonna go into that. But part of that relief was because I didn’t realize how serious it was either. So, we were all a little bit the blind leading the blind, as they say. But so, just to go back and go a little bit chronologically, so, you know, I was, you guys can both attest, a fairly healthy child. I mean, other than a lot of ear infections, right.
Peggy: 04:33
Right. Very healthy.
Guy: 04:35
Very healthy.
Cheryl: 04:36
And very athletic, and active, and…
Guy: 04:38
And led a very enviable lifestyle. You never drank; you never smoked. You didn’t do drugs, or you didn’t have time. You were always doing athletics, and so that’s important to note as well.
Cheryl: 04:59
Yeah, yeah. I definitely felt like I kind of, quote unquote, ‘did all the right things’.
Guy: 05:04
You did.
Cheryl: 05:05
And then, suddenly out of nowhere, my body started breaking down and we were like, “What is going on?” Yeah, and, you know, it isn’t caused — rheumatoid arthritis, as we know now, it’s not necessarily caused by any one lifestyle factor. But you are more likely to have it if you are a smoker, actually. Yeah, yeah. But, you know, basically, as I’ve said in the podcast before, but people might be listening for the first time, I graduated high school in the year 2000, and went off to New York from the Seattle area. So, I went quite far away for school, and, but didn’t really feel too nervous about that at the time, and joined the soccer team, joined the track and field team. This is, again, continuing the super active, vibrant lifestyle. And then, I started feeling like my stomach stopped working, you know, around my sophomore year. It was like the weirdest thing. I just would, you know, just eat the same things, do the same things as I was doing, and all of a sudden, I could — I was noticing I was feeling weaker, losing weight. And it was, it started slow at first, right? It wasn’t like, one day I could eat a full meal, and the next day I couldn’t, but within a year’s time, I was really not able to eat very much. And so, we started, of course, going to the gastroenterologist. You wouldn’t think — this is like on the list of symptoms of rheumatoid arthritis and a lot of autoimmune diseases, but it’s normally accompanied by a lot of joint pain which I was not having at the time. So, off we went to the gastroenterologist just thinking maybe I had something in my stomach. They even evaluated me — do you remember when they looked for if there was a hairball? One of the first procedures I had done was because early satiety — or satiety, however you pronounce it — when you get full really quickly when you’re eating can be caused by something called a bolus in the stomach. And it can be caused by a human or animal hairball in the human stomach. It can happen if people — there’s like mental illnesses where people eat their hair. But there’s also people who just accidentally, you know, swallow hair from their pet or from themselves. And so, when they did the endoscopy, that was actually one of the things they were looking to find, and then we did the barium swallow and all that. And then, we kind of got some interesting conversations that I’ve referenced before with the gastroenterologist, where he kind of implied that, well, these tests don’t really show anything is going on. So, she must be — what did he tell you?
Peggy: 07:44
Well, many things, all of which really, really revealed a bias on his part. And he said, among other things, he said that the problem — he looked at me and he looked at you, and he pointed at each of us, and he said, “The problem is between you two, your relationship is bringing this on.” And you know, when a doctor says something like that, anything like that to you, you can’t help but think, okay, he’s a doctor. I, you know, what’s going on? Maybe I’m crazy, or you know, maybe there is something to that, but I know there isn’t. And he was very judgmental, even at the point that — I don’t know if this is going out of order — but even at the point that you finally got diagnosed with rheumatoid arthritis, and we returned to him, because you still did have gastroenteritis, he said, “Oh, I don’t believe that. It’s not rheumatoid arthritis. Are you sure it’s not lupus?” And it was his predisposed mind. His mind had been made up. And it’s only in hindsight that I realized how inappropriate that was, you know, but there it is. I’m sure a lot of people have experienced that kind of thing.
Cheryl: 09:07
Yeah, and it’s so — I’ve mentioned so many times about how unusually happy my childhood was, how unusually strong my attachment was, parental attachment. And just, you know, people talk about attachment styles and all that. And I often joke that, like, it was like growing up in Mr. Rogers’ neighborhood. You know, our family is a very happy family. Obviously, no one’s perfect. But to insinuate that there’s some problem between us, that was so bizarre and out of left field. I think what he was trying to say was that we were, quote unquote, like, ‘too close’, that a 20-year-old shouldn’t be bringing your mom to an appointment.
Peggy: 09:42
Yeah, yeah. And I remember it was right along those times when they were starting to come out with those milk cartons that had missing children on them. And there was a time — there was a time, and kind of things that I had not worried about when you guys were tiny, I thought, “Oh, I’d better go with my kids to the doctor appointments even when they get older because you never know, you know, what kind of crazy stuff might be going on with that doctor.” And yeah, I think I was — and when you went to the chiropractor, I went with you because I was, I just, my imagination went crazy thinking, you know, maybe that doctor’s some kind of predator.
Cheryl: 10:21
There are — I mean, that’s what’s happened with another chiropractor is when I hurt my knee with soccer. But there are definitely providers who have abused young girls, unfortunately.
Peggy: 10:31
Yeah, that’s true. And yet, at the same time, I had a hundred percent confidence in you. It wasn’t any reflection on you. I just thought, no, that extra body in there isn’t a bad thing. That doctor did not agree with that. Well, and, you know, I think there were some cultural issues to possibly anyway.
Cheryl: 10:51
Yeah, I think that the way that that particular doctor viewed women was kind of, unfortunately, a symptom of what a lot of, or how a lot of women are treated in the healthcare system, you know, across countries, that women’s pain is not taken as seriously. And, yeah, I remember just thinking it was a no brainer for me if you were willing to come with me to the appointment. First of all, I’m still on your insurance, so you’re — and I’m still financially dependent on you at that point, you know. I’m so grateful that you’ve paid my way through college. And I was, you know, it wasn’t like I was a completely independent adult. And that’s one of the dimensions of this diagnosis story that I hope is maybe interesting to some people, because I think there’s kind of the realm of juvenile arthritis, where you have kids that are diagnosed at age three or four, and then the parents are obviously heavily involved. And then, you get fully formed adults, you know, that are like 35 and had a baby and then their body, you know, wigged out and developed rheumatoid arthritis, and they go through their story. But for me, I’m in that liminal period, that in-between. I’m not a child anymore, but I’m also not a totally independent adult. I had never navigated the healthcare system other than annual physicals just that were required for my sports, you know, so, or just, I mean, I did have some ear infections. I didn’t have throat inflammation — I got that Coxsackievirus in school, which I had a lot of throat inflammation after that. And they did start me on Prilosec. So, I should say, I guess I had one diagnosis for acid reflux and just throat irritation. But that was, it was really not like I had grown up being feeling like I was chronically ill person or, you know, not at all. So, yeah, it was so weird because it felt like, okay, well, we’re going — like, Cheryl, something’s wrong with her stomach, obviously. Like, there’s a before and there’s a now. Before, I ate whatever, I worked out, I had my life, my body digested the food. And now, there’s a now which is my body’s not digesting the food. It’s just, I kept saying it felt like when I was eating that there was a bowling ball in my stomach, and just nothing was going through. And he’s just kind of like, “We did these tests, and you’re fine, like you’re just anxious,” or, “You’re a hypochondriac.” And then, he finally did a gastric emptying scan — and so, this is all going to lead to rheumatoid arthritis, believe it or not — but the gastric emptying scan did diagnose gastroparesis, which is a disorder of the autonomic nervous system. And that’s the part of your nervous system that’s, like, does the things that you don’t think about, like breathing, heart rate, stuff like that. And it also is when you swallow food, that’s under your control. When you first swallow, you’re like, I’m deciding to swallow. And then, once you swallow, it’s your autonomic nervous system that does those contractions that move the food down, and they’re like little electrical contractions. And in my case, I remember, specifically, they said it was five times slower than an average person. And they said that it’s, normally, there’s only two known causes of it, is either long-term, uncontrolled diabetes, which I did not have, or a result of, like, serious, long-term eating disorder like bulimia or something where you’re, you’ve kind of put your system through a lot and it shuts down, and the rest of the cases are just idiopathic. So, I do think, I don’t remember if anyone — like, they never told me they thought I had an eating disorder. But I do know that that was something that, like, you watch somebody who’s like a Type A person go from like 130 pounds to 104 pounds, it can’t help cross your mind, maybe they have an eating disorder, but you guys always believed me.
Peggy: 14:31
I always give your dad a lot of credit, because while he was working this whole time, more than full-time running a business, and I was essentially a stay-at-home mom, I was immersed in the day-to-day trying to figure out stuff. And it’s easy to get, it’s easy to get overwhelmed with that as a parent, because you want nothing more, you know, the most important thing is for your child to be okay. And there were times when I, you know, if enough people say to you, not that people have literally said to me, “Maybe she has an eating disorder,” but people would suggest things of having related to anxiety and so forth. And at one point, I just thought, I don’t know what’s going on. And your dad said, “I know Cheryl.” [Pauses] It’s emotional for me.
Cheryl: 15:27
Yeah, no, me too.
Cheryl: 15:29
Well, yeah. I mean, I had zero doubt that she had any kind of eating disorder. I mean, I saw her. And we did things together. She didn’t, you know, she ate like a normal person, she did everything like a normal person. And that’s what just, you know, when we went through all these iterations of trying to find out what’s wrong with her, I mean, I just thought to myself, my God, Cheryl, of all people, who’s lived a life, a dream life of goodness, of not, you know, not doing drugs, not self-destructive of all, and to have these kinds of problems. And being this young, I just thought there’s, you know, we got to get to the bottom of it. I mean, that was, I just, I don’t care what it takes. But this is not — something’s not right. And I know it’s not, I could tell you right off the bat, it’s not an eating disorder. It’s not — I mean, Cheryl has been, I will admit, very close to her mom and dad.
Cheryl: 17:00
That’s true.
Guy: 17:01
She’s, I remember, as a young girl, even in fourth grade, we tell Cheryl and our other children that we were going to go skiing that day on a Monday, we always — I worked on the Saturday and through Tuesday, and so we had Sunday and Monday’s off, and we tell the kids that we’re going to go skiing. And Cheryl, I could just tell, she really didn’t want us to go skiing. She was kind of afraid that we might get hurt. And the other two kids could care less.
Cheryl: 17:45
I remember, and I do think that with all the therapy I’ve done for anxiety now, I can look back and see some of the signs of maybe a bit of like I was just very, very safety aware and very — and that, obviously, that’s the problem. The anxiety is very helpful and adaptive in many cases, right. Like, anxiety about maybe I should put my seatbelt on for the car is obviously helpful, right. But if it’s — so, who gets to decide where we draw the line, but if I don’t know…
Guy: 18:17
Cheryl was always the most hyper-aware of everything around her. And it just — so, it did not surprise me that she would get a little anxious when, you know, we do something like that because she just, she’s always thought ahead.
Cheryl: 18:41
Yeah, and to relate it to the, you know, physical health issues, it felt so frustrating to me to be kind of having multiple doctors insinuate that I was just anxious. Because I’m like, I literally had — I had anxieties about various things, like about — my nickname on the soccer team was ‘Mom’ because I was always, I watched those educational videos in middle school and high school worked on me where they’d say, you know, people who drink too much alcohol can, like, die on their own, choking on their vomit. And so, I wouldn’t go home until all I knew everyone on the team was safe, you know, things like that. That’s what I was anxious about. I wasn’t anxious about my health. Like most people who are 19, 20, I just took my health for granted. Like, obviously, like, you know, I eat well, I exercise, I’m going to be fine. It’s that false premise that a lot of people operate on. So, what felt frustrating was to be like, if this is a chicken or egg problem, clearly the the first one — I guess we don’t know if it’s chicken or egg — but the first thing that happened was my health issues happened, and then I got anxious about that. It was not like that I was anxious. I never spent a second of my life considering, “Am I going to digest my food today?” It’s just, my body just does it. And so, that was what was so frustrating. We ended up — but so, back to you, that you said you — both you said that you were like, you got to the point where, yeah, you had to consider all possibilities, but you definitely trusted like I would tell you. Like, I wish, when I went and studied abroad in Australia in 2003, the year I got diagnosed. I studied in Australia from January to March or April, and I wasn’t feeling good, that we kind of had these discussions beforehand. I mean, I’m gonna either feel crappy in New York or feel crappy in Australia, but it’s been a lifelong dream to study abroad. But when it came, it was either — we can’t remember because we don’t have all the records — but it was either right before I went to Australia or right when I got back that you hired the concierge doctor. And that was, like, that was a really good idea. In retrospect, obviously.
Peggy: 20:42
It was a new, new concept.
Guy: 20:43
Yeah, yeah. That’s right.
Peggy: 20:44
It was, it happened to be our regular — well, I don’t want to identify anybody, but it was within the clinic that we were already going to, and some of the people left to join the concierge portion of that same overall umbrella. And so, it was a fairly seamless transition.
Cheryl: 21:05
Yeah, it was. And I’ve mentioned before, just it’s so we had the financial privilege to be able to do that. It wasn’t just like that you had endless money. So, you had to decide, like —
Peggy: 21:15
We just joined for you. We could have joined as a family, but frankly, nobody else really needed it. And it was, you know, more economical just to go one person at a time. And even that took a little while. It wasn’t a magic, immediate diagnosis.
Cheryl: 21:36
No, it wasn’t like Dr. House. I mean, but she, and the first thing she said to me was — this was one conversation I remember specifically, where I had, I wanted to be a good little patient, and I brought her because, again, I had this diagnosis now of gastroparesis, but something else was wrong. I had this sprained finger, and I didn’t know what it was. I had this sprained finger which was so low on my priority that it didn’t even make it into any of the appointments until I’m all my joints started hurting. So, I had this one joint, the finger, and then I, you know, told her, look, like I’ve got this diagnosis of gastroparesis. There’s not that much you can do for it anyway, but I’m doing the gastroparesis diet, I’m taking the random stuff that the gastroenterologist said, and like, it’s still not, like, I’m just wasting away, you know. My muscles are going away. And, you know, I brought her a little food diary. I mean, I don’t like thinking about food that much. Honestly, I just want to just, I like baking and eating like, you know, sweets and sugary foods, but I don’t want to, I’ve never been the kind of person that’s been like, “Oh, I want to, like, go on a vegan diet, or go on —” I just didn’t like it, it’s exhausting to me. So, I but I guess the way I presented to her was like, she literally just said, “Now what do you think it means that you kept this journal?” She was like, “What do you think it means?” And I was like, it means that like, I care about my health, and I’m trying to feel better. Like, I wish that that’s what I said; that’s what I felt. But I was like, “I don’t know,” and she’s like, “I think it means that you’re, like, hyper fixating on your health.” So, she first went down the road of health anxiety, too, the concierge doctor, and then she prescribed me Lexapro. And at that point, I was like, you know what, yeah, I am pretty frickin’ anxious, people, because no one is figuring out my health issues. But I was so — I had started to legitimately develop — it’s like this tragic thing where I had started to develop panic attacks. So, yeah, that is legitimately, you know, anxiety disorder territory. But it felt again, so frustrating. So, I was like, I never had panic attacks before this started happening.
Peggy: 23:47
Yeah. And, you know, I think it was a matter of maybe three months or so. It wasn’t an extended amount of time until she put the pieces together, you know, based on, thanks to your input. And at that point, it became really, really helpful to be part of the concierge because she put you literally that day to the rheumatologist she referred you to, and they had — they had, you know, they prescribed the methotrexate right away. I mean, it was like, you know, right away. And then, I think it was maybe a month later or two. My first reaction, however, was — I don’t know if this is out of order.
Cheryl: 24:31
Well, let’s just, just really for the record, I have said this before, but again, some people might just be listening to this episode, that I did wake up one morning in July of 2003. It was either late June or early July, with every single joint hurting. So, it wasn’t just the sprained finger. And I was like, okay, this is new. This is a new symptom. And I had, we reported that to the concierge doctor. And that’s when she was like — and what I remember, specifically what frustrated me, is that previously I had been told by her and the gastroenterologist, “Well, we ran all the bloodwork and everything’s normal.” And then she said — so, then it came, she’s like, “Well, okay, I’m gonna run more blood work.” I was like, well, then why did you tell me before you ran all the bloodwork? You didn’t run all the blood work if there was more blood work to be run. But okay, I’m the anxious one — no, I’m just kidding. Obviously, I feel defensive about that. Yeah, so then —
Guy: 25:28
And you should be.
Cheryl: 25:29
So, it is, for the record, bilateral inflammation and pain of the small joints of the fingers and toes. That is the cardinal symptoms of rheumatoid arthritis. So, it’s not necessary, it’s hard to say whether they should have been able to put the pieces together earlier, but I just wish what had not happened is that they had made the conclusion that I must be just over anxious.
Peggy: 25:52
Yeah, without ruling everything else out. And it just breaks my heart thinking of all the people out there that are probably still being told that, that may have an autoimmune disorder or something else. But I mean, obviously, autoimmune disorders are just notoriously hard to figure out for many, many people.
Cheryl: 26:12
I really think that default, yeah, and that’s part of why I do share these patient’s stories on the podcast. And, you know, the default state should be to believe patients, you know, and to say, “Yeah, sure. If you’re feeling a lot of discomfort,” I was feeling a lot of pain. It wasn’t joint pain. I was feeling stomach pain all the time, “If you’re feeling discomfort, if you’re feeling, you know, scared about the fact that you don’t have any answers, that’s a normal human response.” Like, let’s give people — if they had presented that to me, like, I want you to try these anxiety meds and maybe go to therapy, because this is a lot for you to go through right now, that would have been a lot different than saying, “I think nothing’s wrong with you,” that’s the gaslighting. “Nothing’s wrong with you, because we did the tests and nothing’s wrong.” Okay. You didn’t do all the tests, first of all.
Peggy: 26:57
Right. Right.
Cheryl: 26:58
You know, and so.
Peggy: 26:59
Yeah, that’s a really important distinction.
Cheryl: 27:01
But yeah, so then we got — so, all my joints were hurting, and we’re like, okay, this is weird. And then, yeah, the doctor at the time —
Peggy: 27:11
Did the blood work.
Cheryl: 27:12
Yeah. And all I remember from that conversation when she told me she thought it was rheumatoid arthritis, and she’s going to send me to the rheumatoid rheumatologist, I went like, “What’s that word? The what-it-ist?” But I was like, I remember thinking her face is really serious. Like, why is she acting like this is such a big deal? Because and it wasn’t just that I thought arthritis wasn’t a big deal. It was that, I’m like, do you understand? You’re telling me I was right this whole time? Like, where’s the moment when I get to say I was right? I was like, why are you so — why are you looking like this is such a sad thing? Like, me being like a know-it-all, I’m like, hah! I told you! But what were you guys feeling at that moment when we finally found an answer?
Peggy: 27:58
Well, it —
Guy:
Oh, my God.
Peggy: 27:59
You know — oh, do you want to go?
Guy: 28:01
Well, yeah. I mean, finally, and after so long, of all these appointments, and all this kind of up and down that Cheryl had to go through, going to see these people and thinking that they’re really gonna help you. And then, you know, if they come up with things that we, I mean, we literally know just aren’t true or aren’t really the source of this thing, and have to find a source to say, “Oh, okay, well, now we could work on it. Now we could understand it,” And of course, I don’t think either one of us knew —
Peggy: 28:49
The nurse who showed you how to inject yourself with the point that you had, Enbrel, she said — I was like, “Can’t we just put this off? She’s going to be captain of her soccer team. You know, it’s senior year. This stuff has side effects. Oh, yuck, you know, it’s just arthritis,” I mean, I’m ashamed to say now. And she looked at me and she said, “There are people that, prior to this medicine being available, they couldn’t walk, and they took this medicine and they got up and walked out of bed. So, you know, it’s a huge step forward to be able to take this and don’t wait a year,” you know.
Cheryl: 29:29
I remember — because I don’t remember that conversation. I just remember being like, I felt like I was just desperate to just take anything, like, literally inject me with whatever. Like, I have claustrophobia and cleithrophobia, which is fear of being trapped, but I never had a needlephobia. So, I was just like, sure! Here, arms, legs, wherever. Put it in me, get me better. But I don’t remember the conversations. I think you remember — I remember you, so you asked them, you said, “Can she wait a year?” and they said, also, that there’s people where they’re at the bloodwork and the numbers that I had, my inflammation, they said, “In one year she could be in a wheelchair,” you know, and that’s — and as I’ve said on the record many times that the wheelchair is not the worst fate you can have, by any means. It’s just you have an option in the beginning.
Guy: 30:22
Well, it’s not gonna — I mean, I think the deal is, it’s not gonna get any better, you know, this diagnosis is a serious one. And the sooner the better. And thank God, there was something they could do. I mean, I just — it scares me.
Peggy: 30:43
Yeah, she said, If there was ever a good time to get it, it would be now that these biologics are available. And I’ve heard you mentioned this on your podcast several times. You know, people tend to focus, I don’t know why, on the side effects rather than the reality if you don’t take anything. It’s not benign, you know. And so.
Cheryl: 31:08
Yeah, and they also don’t — you have to weigh the side effects versus the benefits of the medication, if it works as intended, you know. And so, we were very lucky that I went. So, it’s hard. It’s a confounding variable that I started the anxiety meds a couple of months before, because now we know there’s like an axis between the gut and the brain, and that anxiety, like a lot of your serotonin, which I was on an SSRI, a lot of your serotonin is processed in your gut, but between the treatment for rheumatoid arthritis and the treatment for the anxiety, I completely, I mean, you wouldn’t expect, sorry, you wouldn’t have expected that anxiety meds would help my rheumatoid arthritis, but you would expect they would help my stomach now there’s a known relationship between those. But so, between getting the arthritis, rheumatoid arthritis flare up under control, and the anxiety meds, I put all the weight I had lost back on and I was like, woohoo! Like, I got my life back, you know?
Guy: 32:11
Yeah, absolutely.
Peggy: 32:12
I mean, you were — what I was told was that your numbers, your rheumatoid factor in your blood were so high that they didn’t even chart that high. So, we don’t even know how high they were. They were literally off the charts.
Cheryl: 32:26
Yeah. Off the charts how they measure it. Yeah. Yeah. And I, it’s such a double-edged sword, right? Because then we’re feeling like we have this relief or this direction to go. But then also, oh, wait, this is an autoimmune thing. We were just talking about that you felt, dad, that, like, there was not going to be any more this malarkey, meeting the doctors, insinuating that I must be making it up.
Guy: 32:52
Exactly. And I lost my faith in doctors quite a bit. I just kept, you know, hearing these things that you would, Cheryl, you would you tell me. Cheryl would, we’ll, you’d tell me they said this. And I said, whoa, this is not right at all. And fortunately, we had the wherewithal, and you had the time, and Cheryl was willing to just keep at it, just don’t stop. Because it’s just not right. It’s not right to have a 21-year-old, a 22-year-old, that is losing the kind of weight you were losing. And something is drastically wrong, and we got to find out what it is. And we did, and thank God. Thank God that we did what we did and had the wherewithal to do it, and at least we got a diagnosis, and now we could get on with trying to live with what —
Peggy: 34:12
You know, we live in an area of the world that has excellent medical care. Really excellent access, I should say, to medical care. I just feel for people that have to drive hours and hours or maybe even fly if they’re in really remote areas. It just requires so much time and energy in most cases.
Cheryl: 34:35
And access to insurance.
Peggy: 34:36
Yeah.
Guy: 34:37
Oh boy. Oh boy.
Cheryl: 34:38
So many things. And just for the record for people who might want to understand how weight loss is related to rheumatoid arthritis, so yes, I did have gastroparesis, which can cause weight loss. But also uncontrolled rheumatoid arthritis causes something called rheumatoid cachexia, or cachexia, however you want to pronounce it. And that is a direct result of rheumatoid arthritis, like inflammation affecting the muscles. So, it causes muscle wasting. So, that’s what I experienced.
Guy: 35:07
Yeah, you kept saying you’re so weak.
Cheryl: 35:09
It just was so bizarre. I still can’t quite even believe this all happened to me. I think what’s so, such a mind shift for us all to go through is, yeah, I think, you know, in our family, we tend to be like, I don’t know, maybe, maybe this is more me, but kind of trusting of professionals. You hire a professional, and they do their professional job. Like, so, and I’m not saying the doctors were failing utterly, like, it’s no one is perfect, you know, but it was such a bizarre — I would never think I would ever be like, “Well, they must be wrong,” because they are the doctor. It was just such, but I’m like, but I knew that something was wrong. So, it was such a, it was like impossible to hold these two different ideas at that same time that I know my body. I know this didn’t come out of nowhere. And then, they’re saying, they’re the expert and they’re saying nothing’s wrong, “You did your blood work, nothing’s wrong. So, it must be in your head.” And it’s like, okay, but I know, it’s like, and now we know to advocate, we know to get second opinions. So, it’s like, we didn’t have that experience to know that. If it hadn’t been that the concierge, you know, it wasn’t even like you looked out for a concierge doctor, it was more that the doctor left for it to become a concierge. And for those who don’t know, concierge is kind of like, it’s like a you pay more — this is the thing in the United States — and then they’re kind of available quickly for you, like 24/7, depends on the plan.
Peggy: 36:40
And, you know, the doctor who left to go to concierge that you followed, she wrote a really, really well-written letter explaining why she was doing it. She said, you know, I went to medical school, my goal is to practice good medicine. And I can’t do that when I have 2000 patients and I’m going to the concierge. I don’t remember the numbers, but something like this, then I’ll only have 200 patients, and I can practice, you know, so I can see why doctors would go to that. But it is obviously excluding a lot of people that can’t pay for it. So, anyway.
Cheryl: 37:15
Yeah, we’re just very lucky in it. I’m going to ask you for your best advice for maybe other parents right now going through this period. But first, the diagnosis saga, one of the things I wanted to ask you, Mom, is back to that initial after-the-diagnosis when they started telling us about the treatment. And you told me before we started recording that it was a bit of a humbling experience for you, when they told you that no, you can’t, you can’t really delay this treatment. Like, can you say more about that?
Peggy: 37:50
It was very humbling. Because you’re at that point, especially when your child is sort of changing from living at home, and, you know, they’re off to college, they’re launching themselves into their own life. And your role as a mom or dad is changing. And I wanted to, I wanted to at the same time feel like, you know, up for the first few years anyway, it was like everything depended on me and I educated myself and I did research and tried to figure out why were you getting the ear infections, for example, and that kind of thing. And I thought whenever there were problems, I could solve them somehow, or at least put you through to whoever could solve them. And it was just really a big transition to realize I’m, you know, I would love to be able to go on the computer or read or talk to enough people and solve rheumatoid arthritis, you know, for my daughter, but I can’t, you know. And I just am letting, you know, putting you in the hands of hopefully really capable professionals. And that’s a big leap for most parents to do, you know. I hope that makes sense.
Cheryl: 39:05
Oh, it totally does. And it’s I think it’s even a harder thing now, in a way, in 2023 versus 2003. Because it’s hard for people to remember the Internet, it wasn’t as robust. There weren’t all these different websites like Arthritis Foundation and stuff. It was just kind of like WebMD and really, hardly anything. So, yeah, like there are, it’s like, again, another paradox where you have access to so much more information, but you don’t know what you don’t know. And you have to some sometimes be like, okay, the patients are the experts in their own care and I, quote unquote, I was ‘right’ about a lot of things to do with that I was sick, but then I had to say, okay, I’m not an expert in rheumatoid arthritis. I just learned about this diagnosis, you know. So, yeah.
Peggy: 39:51
And it’s manifested in so many different ways. And it’s, and there are so many different potential approaches to treating it and there’s just a lot of adjusting. I remember when I wanted you to take Airborne before a flight because it increases your immune system. And then somebody suggested, you know, maybe you don’t want to increase her immune system because her immune system’s already overactive. And I don’t even know if that applied to airborne, but it was just that whole mental autoimmune things are kind of, for me at the time, anyway, counterintuitive. You just think, “Oh, everybody wants a better immune system.” So, there’re just a lot of transitions, a lot of adjustments as a parent. And you had a great attitude. You made it easy for me. But it was, it just — yeah, like you said, it was, you know, it was a lot of adjusting.
Cheryl: 40:47
Was it hard to send me back to Vassar in August of 2003? Because it was so new, the diagnosis was so new.
Peggy: 40:54
You know, I felt like it should have felt hard, but I just never, never worried about you that way. You had — you were always a leader; you would always take charge. You had a great attitude. I just, I felt, you know, I felt like you — and you weren’t going off, I mean, you were going to an area in which there were medical people. You were still in college. A lot of your life was still, you know, kind of made a little bit easier for you, you know, than when you’re truly on your own, so I didn’t worry too much. We talked and emailed all the time, so.
Cheryl: 41:34
Oh, yeah. We have stacks of printed out emails. I wish I had access to some of those, or I wish I had accessed those before, but it’s too much to go through. Too much literally, just a lot of reading. And so, yeah, and just to tie up that, first, is this is kind of like this is the diagnosis story and kind of Phase One of my journey, which is that, you know, we reached the pinnacle of the mountain, which was getting a diagnosis. We got good treatment, the treatment worked. And we came down the mountain and we’re like, done. We submitted that; we’re done. And that’s kind of what I thought my life would be for the next 60 years, it would be stay on the medications. And then, there is a Chapter Two. Hey, we’re leaving them with a little bit of a, what was it, cliffhanger. But I mean, Chapter Two, spoiler alert, it gets more complicated because the medicines don’t always, your body doesn’t always respond with medicine forever, unfortunately. I have a friend who’s been on Enbrel for 14 years right now, you know, and she, that’s her journey. And it’s just for me, it worked for six years, and then my body created antibodies to it. But so, this is not to say that it was all sunshine and rainbows afterwards forever. But it was kind of sunshine and rainbows, I mean, kind of, right? I remember feeling, coming back and people are like,
“How are you feeling? I know your health was, like, really bad. Oh, it’s great now?”
Guy: 42:55
Yeah, right. Yeah.
Cheryl: 43:56
Yeah, it’s great. I got my treatment. You know, I went off it. I went off the anxiety meds after a while because it was just like, oh, I guess I don’t, I don’t think I need this anymore. My anxiety was about my health, legitimately. And then, I got my health figured out, so. But then, that also reared its head again later. Anyway, I’m talking too much. But I was gonna say if you have any words of wisdom or encouragement, do you have any words of wisdom or encouragement or advice for parents, who, or in your case, whether their child is two-years-old, or 20, or 40 years old, you know, parents who are kind of in the role of advocate like you were for me when their child seems like they’re really sick, and they’re not getting any helpful treatment by the medical system, or they don’t have a diagnosis yet, what would you say to them?
Peggy: 43:48
Well, I guess the most obvious thing is just don’t give up. And really, don’t apologize for your persistence. So much of that is so obvious in hindsight, that I wish I’d been more aggressive on your behalf. And so, definitely don’t give up. And I don’t know if this is advice, or just sort of acknowledging how fortunate we were, but it really helps if there’s two parents involved, because, you know, sometimes your dad would, he would have been immersed in other stuff all day. And when I tell him what happened, and we were all just kind of going round in these circles, he would say, “Wait a minute,” you know, that’s not, like I said earlier, “That’s not Cheryl, you know. Don’t fall for that. Go, you know, keep at it, find a different doctor,” whatever, whatever. So, it really does help if there are two parents or two advocates in the child’s life or more that can keep that perspective. It’s easy to get bogged down, so, yeah.
Cheryl: 44:51
Yeah, yeah. I and I think you have been, both of you, but I think especially mom is a good role model to me of not being too much of a people pleaser. I guess I should say, you’ve called me out at times of being too much of a people pleaser. You’ve helped me learn to advocate for myself because my default is I don’t want to make waves. Like, I’ve learned, at 41-years-old, I’m a lot more assertive. But when I was younger, I definitely was very, like, deferential to authority. And, you know, I felt self-confidence. I know that I’m smart. I know that I’m, you know, a good person. But I would also be like, “Oh, well, that’s what the experts said,” you know, so.
Peggy: 45:32
Me too.
Cheryl: 45:33
And yeah, so I think you’ve helped me. Because, again, it’s just so — I know now there’s a lot more, I think, of awareness about like, patient self-advocacy stuff, but back then it was, I didn’t think it was very polite, you know?
Peggy: 45:48
No, I know. I think I will agree that I helped you with advocacy. But I think I also was weak in that area when it applied to medical stuff, because I really just didn’t know enough. But I do think it applies across the board, whether it’s medical, or any other aspect of life, you know, advocate for yourself, don’t apologize. Especially as females, you know, we’re socialized to, certainly my generation, to be responsible for other people’s feelings. And so.
Cheryl: 46:24
And it’s like, no one wants to feel sick. Like, no one wants to, you know, feel, yeah. And I did, I tried one year. I don’t know if I ever told you this. This was a few years ago, my New Year’s resolution was to not apologize in my medical appointments, just because I was like, you know, even if I did do this to myself, okay, people make mistakes. Like, I don’t, I don’t want to waste any other time in the medical provider encounter apologizing, unless I actually did something to them, which is not the case. You know, just, yeah, be, you know, you have to be a fierce advocate. Last question I like to usually end with is, you know, what words of wisdom or encouragement would you say to somebody newly diagnosed with rheumatoid arthritis?
Peggy: 47:11
I would say, get as much information as you can, however you can. Obviously, Cheryl’s program is a good example of that. And, you know, don’t be afraid to ask all the questions that you can, and don’t be afraid of medicine. You know, look at all the ramifications, and not just the side effects and talk to people who have been down that road. That’s my advice.
Cheryl: 47:42
Awesome. Well, thank you so much. I know this is a lot of like, kind of a mixed bag of like, painful memories to look back on. I mean, it really is weird that it’s half my lifetime ago. And but it’s also obviously some good memories. And I just, I do want to end by just saying how grateful I am to have had, you know, you both as advocates, and as people who believed me, you know, believed that there was something else going on. Not just because I said it, but just because, like Dad said earlier, because you know me, you knew that I was this, there has to be some explanation. So, it just makes me — I, yeah, the older I get, the more I realize how lucky I’ve been to have such a solid, like, family support. And when I run the Rheum to THRIVE support groups, like a frequent topic of conversation that a lot of people struggle with is their family not believing them. I mean, it’s so heartbreaking. You know, and those are the first people who should believe you. And they’ll say, well, the family’s like, well, whether it’s someone’s own child that doesn’t believe in, like, an adult child, or their own their parents, or siblings, or close friends, or coworkers. I mean, just the experience of not being believed is really deeply, deeply, you know, traumatic for many people and myself included. I think I’m very sensitive to it now because of what I went through, you know, healthcare wise. But I’ve never had to worry about being believed by, you know, by family. So, yay!
Guy: 49:13
Yay is right.
Cheryl: 49:14
Well, thank you again. I know that this is definitely a different thing, that you’re not used to being on the other side of the microphone. So, I really, really appreciate it. And I usually also end by saying where people can find that you on social media, but you both are not really on social media, so we’re not going to worry about that. But if those who, or those people who are just listening and not watching, you can always check out the Arthritis Life website to see a transcript, and a link to the video, and a link to the show notes. And I will also link in the show notes on the episode page to some additional reading about, you know, people who’ve been in a similar situation like that ‘Brain on Fire’ book.
Peggy: 49:54
Oh, my gosh, yeah. Yeah.
Cheryl: 49:56
The woman who, you know, people were saying she was a hypochondriac and turns out she had — what was it that she has?
Peggy: 50:02
Something auto —?
Cheryl: 50:04
Oh, yes, she had an autoimmune. Yeah. And there’s so many good books and articles on this topic. So, if you’re in the undiagnosed territory, you’re not alone. So, thank you so much again, and we’ll say bye-bye for now!
[Ending music]
