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Arthritis Storytelling Hour: Podcast Recording

January 21, 2021
77 min read
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In Episode 22 of the Arthritis Life Podcast, thirteen patients shared their most humorous, heartfelt and compelling short stories about real life with arthritis.

Episode Notes

In December 2020, Arthritis Life hosted an “Arthritis Storytelling Hour” where thirteen patients shared vivid tales from their lives.

Listen and learn about how difficult the diagnosis process is for some, how people with rheumatoid arthritis and ankylosing spondylitis learned to advocate for themselves, how to navigate work life with your condition, what it’s like to be a “spoonie mom,” the importance of mindset, acceptance and self-care, and more! 

Video details:

Topic: basics of life with RA, diagnosis stories, how diagnosis led to career

  • 1:28 – Chloe Umpleby JIA (Juvenile Idiopathic Arthritis) journey
  • 6:21 – Kia Peters: diagnosis of RA (rheumatoid arthritis) during graduate school
  • 11:00 – Sammantha Dorazio: diagnosis led to career as Nurse Practitioner
  • 14:20-Paulina Burzynsk: how RA helped her take better care of your body 

Topic: Advocacy / learning to speak up

  • 24:30 –  Jed Finley example of how he learned how to advocate for himself in the context of medical appointments for his ankylosing spondylitis 
  • 30:00 –  Mimi Cross – how she learned that if something makes you uncomfortable you need to speak up even if that feels awkward

RA’s effect on work

  • 36:13 – Sarah Dillingham – how she became comfortable talking about RA at work
  • 42:30 – Effie Koliopoulos – how RA led her to her passion for writing 

RA and family

  • 46:20 – Ushma Sampat – how RA affects family relationships and life partnership / marriage
  • 54:50 – Jes Hosjan  How AS affects her experience as a mom and how she learned to advocate as a “spoonie mom!”

Humor and Mindset

  • 1:03:02 – Cristina Montoya – Humorous take on life with RA
  • 1:10:17 – Krista – Her experience chasing a past life to be the same “pre diagnosis” and how she learned to embrace the present
  • 1:17:44 – Cheryl Crow – My journey to acceptance of discomfort and uncertainty in life, how ACT (acceptance and commitment therapy) and my two therapists helped me!

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.


Links to speaker pages and websites:

Episode Sponsor

This episode is brought to you by the Rheumatoid Arthritis Roadmap, an intensive online education and support program Cheryl Crow created to empower people with tools to confidently manage their social, emotional and physical lives with rheumatoid arthritis.

Episode

Full Episode Transcript

Arthritis Storytelling Hour – 13 Patient Stories in 90 Minutes

[Introductory music]

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Cheryl:     So, this is a recording from a live event I hosted in December 2020 that I called the Arthritis Storytelling Hour. The goal of the event was just to bring together a lot of different storytellers who have arthritis to share from different parts of our arthritis lives. So, I just want to give you a quick warning of this; it was recorded as a live Zoom meeting, so it might sound a little bit different than the other recordings, but I really hope you enjoy it and I can’t wait to get started, let’s go! Without further ado, I’m going to hand it over to our first speaker, Chloe!

[1:28 – Chloe Umpleby JIA (Juvenile Idiopathic Arthritis) journey]

Chloe:  Hey, everybody! So, my name is Chloe. I’m from the UK, and I was diagnosed with juvenile idiopathic arthritis when I was 18-months-old, so I was just a baby. So, mine has kind of been a saga, because I’m now 21. I can’t really tell you about my diagnosis because I don’t remember, but I do know that from hearing from my mom, my parents, my relatives, that it was a journey, you know, because doctors just wouldn’t listen to my parents, they didn’t think anything was wrong. “Oh, she’s just slow,” but we lucked out with one GP, and got me diagnosed when I was a little baby. And I think I want to talk to you guys about what it was like growing up with arthritis as a child, and I actually — it sounds quite weird, but I actually am quite glad I was born with it, because I don’t know a life without arthritis, and for me that is a positive. It might not be for some people, but that’s just for me. And I think the main thing that I learned from it is resilience. I find that I’m quite a resilient adult now, and I think I attribute that a lot to my arthritis. And also I’m quite stubborn, so I think that’s also because of it too. 

And I wanted to share with you guys a story from a pivotal moment in my kind of arthritis journey. It was just the fall, I started methotrexate. I started methotrexate when I was just eight, because I was — it was quite aggressive when I was quite young. And I remember, it’s a quite serious story, but I look back on it and I laugh. And some people don’t know why I laugh, but I hope you guys will, some of you guys will understand. So, I was about seven. And I remember, I just woke up one morning ready for school. And I got out of bed really excited because I was a little nerd, and I loved school so much. And I got out of bed, and I just completely collapsed to the floor. I couldn’t — my legs just couldn’t support me, I couldn’t walk. And I just remember in my brain, I couldn’t like really compute what was going on, and I just kind of like crawled into my parents’ bedroom and they were getting ready for work. And they were like, “Why are you crawling on the floor?” like, they just thought it was just being a bit silly because I was like seven, and I literally just went, “I just can’t walk.” And they were like, “What?” I was like, “I just can’t stand up,” and they were just like — the panic in their faces, “Oh, my God, our seven-year-old can’t walk.” 

I literally I remember saying to them, “So, can I get dressed for school now?” And people are like, “Why are you laughing?” I’m like, I know it’s serious, and I know it’s like a big deal, but I look back and I can just laugh because I’m like, I just couldn’t understand what was going on, really, and I think that was a good thing. They say ignorance is bliss and when I was younger I kind of had that, until I probably started my medication. And I remember my mum was like, “No, you can’t go to school,” and I was like, “But why not?” And she was like, “You can’t walk!” and I was just like, not getting the idea at all. I was just completely adamant, “I’m going to school!” I didn’t go to school, my parents are good parents, they didn’t force me to go to school. But I just think it kind of shows how stubborn I became. I just kind of wanted to be like a normal kid. And eventually I learned that I wasn’t normal. But that’s okay, that’s totally okay. 

But yeah, I just — it’s just a story that I look back on and I just, I laugh, and I think it’s quite nice because I think it is quite a serious — it’s quite a harsh story, but I just like that I can look back and laugh because I just think, “Wow, I was just such a stupid kid.” I just was just like, “Oh, I just can’t walk, it’s fine. I’m just going to go to school and just be like any other kid.” But yeah, so, yeah. I just laugh because I was like, oh, my God, what was I thinking? And it was after that I started on my methotrexate and then I think that’s where most of my memories of my arthritis kind of come from. Yeah, I just kind of wanted to share that and kind of highlight, kind of what it was like in a child’s mind to have arthritis. And I remember when I was first getting my medication, they gave me this little pamphlet, and it was like, “Timmy has arthritis.” I remember reading it going, “Oh, my God. I feel like that. Timmy is me!” and yeah, and that was just kind of nice to know that other kids kind of had that too, they had that little leaflet and so other kids had it as well. But yeah, so, I just kind of wanted to share a little story.

Cheryl:  That’s so sweet. Through the eyes of a child, right? That’s wonderful. Oh, yeah, we’re getting little claps. And yes, a few people have been asking in the chat about being able to see each other. My idea, off the top my head, is to at the very end promote all the attendees to panelists so we can all see each other, but for the storytelling part to keep it just the storytellers, honestly, so I don’t get confused. There might be too many faces so, and please keep, you know, ask questions or make comments in the chat. Thank you so much, Chloe! Now we’re gonna hear from Kia. 

[6:21 – Kia Peters: diagnosis of RA (rheumatoid arthritis) during graduate school]

Kia:  Hi, everyone! And thanks Cheryl for hosting this and allowing us to tell our stories, because it’s not always very often that we get to tell our stories, you know, or sometimes we feel burdensome for always wanting to share our story, so I was actually really excited today to tell mine. So, I’m going to talk about my diagnosis, and I was first diagnosed when I was going through graduate school which was quite the experience. I was in the middle of my master’s, and it’s actually very similar to Chloe, to quote what Chloe was saying with not being able to walk. I started in about February of 2018 noticing some pain in my feet where I would kind of mention to people, “Oh, do your feet hurt when you walk?” and they’d be like, “No,” and I thought, okay, maybe I’m just making it up. But every day, it kept getting worse, and worse, and worse, until one morning I woke up and I couldn’t walk. My feet hurt so bad that I could not stand on them. And I remember crawling out of my bed and kind of like on the floor of my bedroom, and I was holding on to the wall and I was like, okay, maybe if I, you know, just keep walking around it will just dissipate or whatever. And my partner, he was like, “Kia, you shouldn’t go to school,” and it’s so funny that Chloe was saying this when she was seven-years-old, but here I was that 20, I think 22 — or no, 23, I was 23 years old — and I was doing the same thing. It’s like, “No, it’s fine. Like, it will go away like, it’s no problem.” He’s like, “You can’t walk,” and I was like, “It’s fine! I’ll go to school,” I said, “I’ll just walk around as best I can and then it will go away. It will go away.” 

And so, I went to school because I was like, I’ve got research to do, I’ve got students waiting, I’ve got lab work waiting. I can’t pause on life to take care of this. And so, I went. And then I was hobbling around the lab, grabbing on to, you know, the cupboards and stuff, and our lab technician, she said, “Kia, I think you need to go to the doctor. It’s not normal to not be able to walk,” and I was like, “No, no, it’s fine. I’m fine,” and she said, “No, like, you’re booking a doctor’s appointment right now.” And we had a doctor on campus, so I booked an appointment for the afternoon. I walked myself over there, I went to the doctor, started telling him about my symptoms, and then he like grabbed my hand and he said, “Your hands are ice cold. Is that normal?” I said, “Yeah! Like, they just go cold and numb and I just kind of ignore it,” I said, “Is that normal?” He was like, “Not really,” but they sent me for bloodwork and all of this and then it came back that I was going to be diagnosed with rheumatoid arthritis, but it was a while till I could see the rheumatologist to actually get my diagnosis. So, I was just taking really high dose naproxen to kind of function. 

And I remember just being like, I can still do this in grad school. And I remember being at a conference and I was presenting my research, and I couldn’t do up the buttons on my pants. I couldn’t dress myself, so my lab mate used to help me get dressed in the morning, and during the conference, I would present and then I’d be like, “I have to go to the bathroom.” She would come to the bathroom with me, I would go the bathroom, but then I would come out and she would stand there, and she would do it my pants in the bathroom for me. And I was just like — thinking back to that, it’s kind of like I have to laugh. Because it’s like, why was I pushing myself so hard when I couldn’t even do it my own pants, you know? But I think that’s common with a lot of us who have arthritis, is we just — this happens to us but we don’t want to put our life on hold. We don’t want to take that time to stop our lives where we’re at, so we kind of live in this like little denial, and we’re just like it’s fine, it’s fine. Because we get so used to just the constant pain. It’s always there, so you just get used to living with it. And there was a point where I couldn’t take it anymore and then I did take a step away from school to allow myself to heal so that I could actually put my own pants on again. 

And it wasn’t until I took that little break from my graduate studies that I was actually able to get the inflammation and the pain under control. So, that’s my little diagnosis story. I guess where it’s kind of humorous because I pushed myself so hard. Looking back, I think it’s humorous, but at the time I’m like, I like to share it to tell others, “It’s okay to take time off. It’s okay to take a break and put your health first.” And I wish I had done it sooner. So, that’s my little story. 

Cheryl:  That’s beautiful. Thank you so much, Kia. I wish we could hear everyone, but I’m sure they are all — the audience is also clapping in — gently, those of us with arthritis, are clapping gently. And I love that, yeah, Chloe’s story and yours are similar, which we didn’t even review that ahead of time. So, beautiful synchrony. And now we’re gonna hear from Samantha! 

[11:00 – Sammantha Dorazio: diagnosis led to career as Nurse Practitioner]

Sammantha:  Can you hear me? 

Cheryl:  Yep! 

Sammantha:  Okay. Sorry, I’ve had some issues with my audio. Okay, so, as we’ve heard from everyone these rheumatic diseases, they’re really scary. They take over your life and in the blink of the eye, everything kind of takes a turn for the worse. So, my story started at the age of 16, where I went from being a three season varsity athlete to being in the hospital, because I just I couldn’t move. And up until this point in my life sports is really all I knew. So, when I lost the ability to participate in them, in a way I kind of felt like I lost a part of myself. To this day I often struggle with physical activity because I just know how unrealistic it is that I’ll ever be back to how physically active I was before I before I got sick. At the time that the debilitating pain was taking over my body, every doctor I went through told me that it was all in my head. It was really hard to find a doctor that would listen to me. And then I made it to my amazing rheumatology team, and although I had an interesting case and they couldn’t figure out what was wrong with me, I’ll never forget the day I was feeling at my lowest, I lost all hope of ever getting better. And the doctor looked at it and he said, “Samantha, we’re not giving up, so you can’t either.” And two and a half years of procedures, they discovered that I have polyarticular idiopathic arthritis and fibromyalgia. And along with these health issues, I also struggle with anxiety and depression, GERD, IBS, endometriosis, anemia, and then last month I was also diagnosed with secondary erythromelalgia — sorry, I haven’t mastered the wording of that one yet. So, every time a new disease is added on usually at the complication of arthritis, you get that overwhelming emotion of where your health journey first started and how your life really has changed. 

But on the positive note, getting arthritis is where I found my love of medicine. So, I’m currently in a pediatric nurse practitioner program, with hopes to go into pediatric rheumatology and help other kids and teens, you know, kind of navigate the tricky disease of arthritis. Arthritis has also helped me find my love for Health Policy and Advocacy. I do a lot of work with the American College of Rheumatology, the Arthritis Foundation, and the Alliance for Balanced Pain Management. So, I do a lot of sharing my story, raising awareness, and talking with government officials to try to get laws passed so people with arthritis have better access to health care. You know, at the end of the day, it is a crummy and difficult disease, but I’m in a way thankful I have it and I’m extremely thankful that I have the best support system, amazing family, friends, and parents that just understand the complexity of this disease and understand that hey, sometimes I have to miss out on things. And support like that really means the world. Thank you. 

Cheryl:  Thank you so much for sharing! Wow, your future patients are just so lucky to have you on their rheumatology team. I can’t wait to see where you end up. Oh, this is so wonderful. I wish we could all talk for nine hours because I want to ask all these questions to each speaker, but let’s now hear from Paulina. 

[14:20 – Paulina Burzynsk: how RA helped her take better care of your body]

Paulina:  Hi, hi! I’m Paulina, and pretty much everyone has said that they made notes but I really didn’t make notes. I just wrote down four words. Let’s see where it goes, let’s see where this speech goes. But I think it really makes sense to share a little bit about my diagnosis and then it will lead me on to what I really want to talk about. So, I was diagnosed at the age of 18, which was six years ago. There’s my little counting there. So, it was around six years ago. And just before my diagnosis, to give you a representation of what person I was, I was working full-time driving to work around 40 minutes each way. I was dancing pretty much four or five nights out of seven, so it would be work, home, eat, do what I need to, and then go out dancing; partner dancing parties. So, I was doing that. I was very busy. And then one morning, it literally was overnight — or at least that’s how I remember right — it was overnight. I woke up, and from going dancing, and working, and really being on the go all the time — I was always busy — to not being able to get dressed. This was mentioned by Kia already. 

I wasn’t able to get dressed. I wasn’t able to do the buttons of my T-shirt, or jeans, or coat. I wasn’t even able to open the front doors. I had to knock to my neighbors to open the doors to the house, because no one was there. So, I had to just let myself in somehow, and I had to ask the neighbors help to open the doors for the keys for me. I wasn’t able to make myself a cup of tea, and I grew up in England. Like, how could you not make yourself a cup of tea? [Laughs] So that was, I mean, the way that I made myself a cup of tea was, you know, how you usually lift the kettle with one hand, I would take the oven protector gloves, and lift up the kettle with both hands, using their protective gloves. Very dangerous, very slippery, don’t advise it. But I made myself a cup of tea somehow. And yes, so, my life really changed overnight. It was like super busy to, “Oh, I can’t get dressed.” And living in the UK, my diagnosis wasn’t super easy. It was a lot of going to the doctors, being prescribed paracetamol for two weeks. I mean, well, paracetamol does nothing. Literally nothing. And then having to go to the emergencies. Because only when you get a referral — or at least in my case, that’s what happened — only when my family doctors and my general practitioner got a referral from the doctor at the emergencies at the hospital that they have to do something, only then they actually send me to a specialist for extra tests. 

So, that’s what we had to do. I had to go to the emergencies because, I mean obviously nothing was happening with paracetamol. And then I went to the specialist, I got the diagnosis, but my diagnosis was also not made because of blood results. It was made because of the symptoms I was having and the visuals that were happening already. I was having really swollen fingers, and it really affected my hands, my wrists, and my elbows the most, really, in the beginning. Nothing was showing up in the test but visually and the way I was talking about the things I can’t do, that’s basically how they diagnosed me. And from that moment on, I think I really started disliking doctors. Now I am probably like the worst patient to have because I fight my corner. I stand my ground. There are moments where I speak as if I knew more than the doctor, and actually in some cases, we know more than some doctors out there. I see some thumbs up and some people shaking their heads. Yes. 

It’s such a funny thing to say but yeah, anyway, that was the moment in which I really started to dislike them because my specialist appointments started looking like, I went in, waited for half an hour in the waiting area, then go on into the doctor’s office, was given a sheet of paper with a stick man on it. And I was told to circle the joints that were hurting me. But does this mean advising like, you know, this is hurting me in this moment, or the past three months, or the past week? Nothing like that. Just a stick man and circle the joints that are hurting you. And everyone who has arthritis or everyone who has come across someone with a chronic condition will know that every single day is different. One day you wake up and you’re like, “Oh, great. My finger is hurting.” The next day you wake up and you’re like, “Oh, I didn’t even know that I had pain in my knee.” So, it’s a different story every day. So, coloring that stickman in or circling that stickman was just hilarious. 

However, one thing that that I guess pushed me to and I’ve always been that sort of person that just had to get stuff done — and I’m saying this with the polite wording because I don’t know who’s going to be listening. I was always the person who just got stuff done. And the moment I saw that my doctors are just prescribing the medication that I’m going to have to be on probably for the rest of my life, that there’s nothing that they can really do, that there’s nothing that they really helped me with other than give me a prescription and a stickman copy of the paper that I did with my circles — I went Googling. That was my best friend, like that was my auntie basically or uncle, whoever you want to call it. Google was my best friend. And in there, what I found out is that there are things — or at least that’s what kept coming up. I mean this was six years ago, there’s a lot more materials on this now on the internet than there was six years ago, even though it doesn’t seem that far away. And the only thing that I really saw that stood out from all of these articles, was that, yes, you can start looking after your nutrition. That can help. 

Arthritis, rheumatoid arthritis is an anti — like, inflammation happens in your body, so it makes sense having an anti-inflammatory diet. And then movement was put in there. So, okay, movement. Yeah, that makes sense to not get stiff, to not have restricted movement, and restricted mobility. Okay, that makes sense to me, just logically, right. I’m not a doctor, so it’s just me talking from my own experience. And mindset, because research has also proven our thoughts can be — our thoughts and our feelings can be as painful to the physical body as they are spilling a hot coffee on your hand. So, okay, there’s research for that. Cool. I believe in it. Nutrition, movement, mindset. And as my diagnosis, or as my symptoms came in overnight, I changed all of those three things overnight. Going from a super fussy eater, like there was only like five things I would eat to, “Yes, I’ll try some avocado. Okay, I will decrease the amount of red meats that I eat,” or, “I will try to test this and test how this will make me feel.” And I mean, we’ve got some nutritionists here, so I don’t want to get into that too much because I’m not one, so this is just me talking from my own experience. 

So, I just started doing these and seeing how they make me feel. The same with movement, and the same with mindset. And to cut a long story short, because yeah, I could talk for hours, I basically found that, yeah, nutrition truly helps me. If I find myself eating something that maybe has a bad effect on my body or physical bad effect on my body. And that’s also okay, and I know Kia will confirm, it’s also okay to have these treats and then just suffer the day after with your body, but it feeds your soul and that’s what you needed to make yourself happy. So, I was aware of that. I was like, okay, great. I now made these changes and I continue with them. The same with movement and mindset. And the one thing that I really want to highlight when it comes to movement and mindset, what helped me the most is my discovery of yoga, and that is because yoga is so accessible to every single person out there. You can have a super extreme flow, you can have a super light flow. And it’s not just that, but it’s that body and mind connection. And this is why I became a yoga teacher, because it helped me so much, so now I want to share that out to everyone else. So, yeah, wrap up. A lot of things happened but my basic point, and that’s the ending point of the story, is that we have to make some changes, but we can also still enjoy things that we’ve done in the past. We just have to know what happens to our bodies when we do things like that. The end, full stop. 

Cheryl:  Beautiful! Thank you. You covered — it’s amazing how much people can cover in five minutes of your life story. That was beautiful. And yeah, if you haven’t checked out Pauline’s yoga, she’s got some great videos and tutorials. I’ve taken her classes, so she’s wonderful. Everyone on here has wonderful things, I should mention. And next up we have Jed Finley. 

[24:30 – Jed Finley example of how he learned how to advocate for himself in the context of medical appointments for his ankylosing spondylitis]

Jed:  Hey, everybody! All right, so, it’s great to be here. I was diagnosed with ankylosing spondylitis when I was 12-years-old. So, I’ve had a lot of time to get to know the disease and get to know what it does to my body. And it’s been a long road of acceptance, ignorance, remembrance, patience, and acceptance again. This was years before I ever made any kind of move to take control of my disease and become the professional patient that I am today. But my doctors and my rheumatologists especially, they knew to listen to me, especially when it came to my AS. I was the expert in the room, according to them. My rheumatologist would actually let me take the reigns of our appointments and ask me, “What treatment do you think you would like to try today?” which was great because she actually listened to my thoughts and honored my experience. So, when my rheumatologist, retired and I had to find a new one, I just kind of picked the first one out of the out of the Google and just said, “All right, well this one. I’m the professional patient, all I need is someone to write prescriptions,” you know, so I don’t need anyone who really knows anything just, I know it. So, and I was quite surprised when I sat down with this new rheumatologist and in the first minute she goes, “I don’t think you have ankylosing spondylitis. If you had ankylosing spondylitis, you’d be in a wheelchair, and you wouldn’t be able to walk up straight.” 

What kind of archaic book was this doctor getting her information from? Very few people with ankylosing spondylitis require a wheelchair. And as for my posture, it was a good day. I normally don’t walk that straight. But then she continued, “I think you have fibromyalgia,” and she wanted to cut all of my treatments for ALS and start putting me on more fibromyalgia-based treatment. Well, if you ever saw Donkey Kong, my wife who comes to all my appointments to help me remember what we talked about, she had to hold me down to keep me from coming out of my chair. And I had never actually had to defend my condition before. I had been diagnosed and so I was 12-years-old and I was 34 at the time so, you know, this was new to me. But this is unfortunately something that a lot of people have to deal with. This is the first, last, and only time I ever had to defend my condition. 

But so many other people have to do that every single day as we talked about, where the doctor thinks they know best. “Well, I went to med school and I studied AS or whatever for one hour, and therefore I’m a professional.” No, you’re not a professional until you’ve lived with the disease, and you’ve tried all the medications, and you know what you’re doing. Fortunately for this doctor, I have zero flexibility in my spine. So, when I went, she said, “Okay, well, touch your toes,” and I can’t even touch my knees, she thought, “Oh, okay, maybe, perhaps you do have something wrong with you.” So, we did all the X-rays and whatnot, and guess what? I had a couple of vertebrae that were touching and my blood work showed a little bit of inflammation. Hey, who knew? But these are all things that she was not willing to do because she just wanted to diagnose me with something that I later found out, probably 90% of her patients, she’s diagnosed with fibro and treated them for fibro. She was not an AS expert at all. 

So, the moral of the story is, the message that I want to share, is that you are the professional. It is your condition and you’re the expert in the room, and the doctor, you don’t work for the doctor. The doctor works for you. So, if you go into an appointment, and you think they’re blowing you off, and they’re just going oh, I’ll give you three minutes of talking — no. Don’t let them leave the room until you feel satisfied. If you don’t think your treatments working, tell them, “I don’t feel this treatments working”, “Well, give it a day or two”, “No, I don’t think this treatment’s working, what else can you do for me?” You need to take control of your doctor’s appointments, you need to take control of your disease, and you need to take control of everything you do in your life. So, in final, I want to say that being the only guy in this entire room right now — guys, if you’re watching, you can be an advocate to, you know! You can sign up for stuff like this. Not that I don’t enjoy this, this is great. I love being the one guy in all these events that I do, but it’s getting ridiculous. So, come on guys, sign up. All right, that’s me. Bye! 

Cheryl:  Thank you. So, everyone’s like — everyone just wants to like unmute and be like, whoo! That was awesome. And yeah, I will say Jason Webb, who I had on the podcast, the Arthritis Life podcast, he really wanted to join but he had a conflict today. So, there was one other, but yeah, I don’t want just one, I want as many voices as possible. Thank you so, so much, Jed. As a chronic people pleaser, man, that has taken me a long time to figure out how to advocate. It is hard. Another speaker on advocacy is Mimi up next. Let’s hear from Mimi Cross of Inflammation Vacation! I love that name so much, if you follow her on Twitter. 

[30:00 – Mimi Cross – how she learned that if something makes you uncomfortable you need to speak up even if that feels awkward]

Mimi:  Hi, guys! I’m Mimi. I am 27-years-old, and I was diagnosed with rheumatoid arthritis right before I turned 21 when I was in college. And while I was in college, I really just did not accept that I had RA, and I didn’t take any time to, you know, work on feeling better. And so, by the time I graduated, I was in a lot of pain, a lot of inflammation, and feeling terrible. I moved to a new city with my boyfriend away from anywhere close to my family or anyone. And so, it was a really kind of bad time trying to figure out like how do I use my hands again. So, I had just been put on a new medication and I was waiting for it to work, and I was like, “Okay, what else can I do?” So, I was looking into, you know, different natural therapies. I love combining the two, like medicine and natural. I found this wellness coach and I was like, alright, I’ll try it. I need anything, anything that could work. And I went the first day and she handed me this pack, and it was like three pages, single-spaced of all the rules, if I wanted to see her, that I could not do. It was like everything. 

She was like, “You have to sign this. You can’t do any of these things if you want to be in it.” It was like, things to eat things, exercise, and medications you shouldn’t take, just basically all stuff. And I looked at it, and I was like, “Oh, my God. This is like half my life. Like, how do I just like cut this out?” But I was like, I was so just desperate for anything that could help, and I felt like there was no one else out there. So, I was like, all right, so I signed it and I left, went home, and I just kind of freaked out for the next three days. I had appointment the next week. And at the time, after I signed it, I really thought in my head I was like, if I break these rules like I’m breaking the law or something, because it felt so official signing this contract. So, I really just like freaked out. “Oh, my God, what did I sign? How am I going to like, do all this?” 

And so, it got to the weekend before I was supposed to go back in. I was just feeling so stressed, and my boyfriend and I went to this cafe to eat, and I was like, I’m ordering bagels, cream cheese. I’m getting a giant blueberry muffin. I know this isn’t on the rules, but like if she didn’t tell me anything I could do, just everything that couldn’t do. I was like this is just too much. I don’t know what to do. And so, I sit down and the waiter brings me the food. And right when he puts it on the table, I’m sitting facing the door, she — the wellness coach — walks in and looks me directly in the eyes. And I was like, this is the worst case scenario of what can happen right now. I felt so awkward. My life is just usually awkward stories and cringe-worthy moments, and this was one of the worst. And I was like, “Does she know it’s me? Should I just put my sunglasses on?” I was like, I don’t know what to do. And it forced me to — I ended up calling. She said, “Hi,” to me. She luckily didn’t bring it up then, but I called that Monday, and I was like, this just isn’t for me. This is just not the time for this. 

And at the time, I really felt like there was no one else out there, and it just made you realize that there’s always other people, and they need to ask about you. She never asked about me or asked about my body. And I was like, how can you make all these rules for me without, you know, talking to me more. And it’s hard. I think it’s really scary at first to speak up and, even now, years later, it’s still sometimes is scary, but from one super awkward position which can happen — which happened to me — into like, it’s your body and you know best. And if you don’t speak up for it, no one will, and then you’re going to be doing something that might not work. For me, you know, I found more people who could help and who could balance natural with medicine without having to sign a contract. They worked with me, for me. And at the time, I felt like it was really against me, like I had done all these things wrong in my life by doing all those rules. I was like, well, this is all my fault. But it really taught me to speak up, and it’s made me definitely more confident now later to speak up about it. So, yeah, that is my awkward story that turned into advocating for my health. 

Cheryl:  I love it. Thank you so much. Yeah, I think I was thinking as you’re talking, we can have a whole storytelling hour all about awkward medical encounters. Thank you so much for sharing that. 

[Intermission begins]

Hi, everyone! I’m interrupting really quickly to remind you that this podcast is brought to you by the Rheumatoid Arthritis Roadmap. It’s a comprehensive online education and support program that I created from scratch to help people learn how to live a full life despite rheumatoid arthritis. In the course, you get to learn how to manage everything from physical symptoms like pain and fatigue, to social and emotional aspects of living with rheumatoid arthritis. I even cover the logistics of things like how to track symptoms and how to advocate for yourself in medical appointments. To learn more, go to myarthritislife.net. 

[Intermission ends]

Cheryl:  Next, we’re going to we’re going to transition a little bit to talk a little bit more about how our journeys with inflammatory arthritis affect our experience of working or our career paths, which has been touched upon a little bit before, but Sarah is going to talk a little bit more. Hi, Sarah!

[36:13 – Sarah Dillingham – how she became comfortable talking about RA at work]

 Sarah:  Hi-ya! Hi, I’m Sarah, I have rheumatoid. I’ve been diagnosed for over 20 years. And when I was first diagnosed, my rheumatologist sat me down and he told me that a quarter of people with arthritis — so, one in four people — end up leaving the workforce within five years of diagnosis. And then he said, “I think you’re one of those people. So, you need to start thinking about what you’re going to do, how you’re going to earn money. You’re going to need to claim benefits.” And I did not handle this very well. In fact, I was — I didn’t want to hear this at all. I was not into it. And that’s because I really loved my job. At that time, I was working in a law firm in London. I loved my job, I loved my colleagues, and the thought of stopping working just — it just was too much. Especially because I was single and I needed to financially support myself. So, the way I dealt with this was by completely ignoring it, and carrying on as usual, like Kia was describing earlier in fact. And that kind of worked for about six months. But after about six months, my symptoms started to get really extreme and get really difficult to manage, and it became very, very hard to keep my rheumatoid a secret at work. I got to a point where my desk drawer was just stuffed with like painkillers, and anti-inflammatories, and heat pads, you know, and all these things we use all the time to try and manage the pain and inflammation. 

And eventually, it kind of came to a head when one of the partners of the firm, he stopped at my desk for a chat, and he was sitting there and he was looking very puzzled. And he said to me, “Why have you got wires coming out of your leg? Are you some kind of robot? What is this?” and I explained to him that I was using a TENS machine, which is a machine that uses electricity to manage pain, I explained to him that I was using a TENS machine to manage my rheumatoid. And he just couldn’t believe it. He just said, “I cannot believe I have someone working for me who has an electronic device on their leg because they’re in so much pain. I need you to go see HR right now, and I need you to take a couple of days off, and we need to figure this out.” And that’s when it first dawned on me that even with rheumatoid, there are organizations and companies who are willing to try and make it work for you. Now, I was very fortunate in that I worked for one, and I was able to find flexible ways to manage rheumatoid. 

The biggest revelation for me was that I could be open at work about having rheumatoid, and I took that forward in a really big way. I did a complete 180. Every time I moved into a new role, or a new job, or worked with a new team, I would email people and say, “Hi, I’ve got rheumatoid. This is what it is. It’s not what you think it is, it’s this. It’s an autoimmune disorder. And you know what, if you see me wearing a wrist brace or something around the office, this is why. No need to come and ask me about it, I’ve sent you an email, you know what’s going on. And also, it doesn’t stop me doing my job effectively.” And that worked really well, because it really shut down any gossip, it headed off at the past all these awkward questions. Now, the good news is I was very fortunate. 90% of the people I worked with were extremely accommodating, and supportive, and nice about this. However, there were a few people who were not so nice. But my view on that is that if you work in a competitive kind of environment organization, you’re always going to get a few horrible people. And if they weren’t going to try and undermine me about my arthritis, they probably would have found something else. So, I didn’t really try and let that, you know, get to me. But overwhelmingly, it worked for me, being open about it. Now, that’s a very personal thing and if you’re thinking about when to be open at work, you know, it’s a very personal decision but it really worked for me. 

All right, fast forward 15 years, I now work from home. I, unfortunately, did get to the point where I used to commute to Canary Wharf in London, from South London, and it got to be too much to me. So, I started my business so that I could work from home and that was a few years ago. Now, I’m at the point where I’m actually really optimistic for younger people with arthritis, because one of the good things that’s coming out of COVID is that for many people who are working in office style jobs, many companies are now embracing home working, and are getting really comfortable with doing what we’re doing today using Zoom and similar video chats. So, I’m really hopeful that we are going to see younger people being able to stay in work longer with arthritis, and not having to do what I did, and strap TENS machines to their legs a few hours a day while working in a law firm. All right, that’s my story. Thank you. 

Cheryl:  Awesome. And don’t — I’m gonna put a plug in for your company, Sarah. Do you want to talk about Grace & Able super quick? 

Sarah:  Very quick, yes. So, I run a business called Grace & Able. We are developing better orthopedic bracing for people with arthritis. So, products you would want to wear that look good, and feel comfortable, and are medically effective. We launch our product next spring. 

Cheryl:  Yeah, so, this. And if you haven’t listened to her story on the Arthritis Life podcast, she talks about how she had to make her own visually appealing wrist brace for her wedding. And that kind of inspired her to make a, what should be a very obvious thing, but is not in the medical field, which is a medical device that doesn’t look ugly. Hi, people! This should not be a revolutionary thought. People don’t want to wear ugly stuff. So, anyway, sorry, soapbox. Okay, now we’re gonna hear from Effie. 

[42:30 – Effie Koliopoulos – how RA led her to her passion for writing]

Effie:  Hi, guys! I’m Effie over at @RisingAboveRA on Instagram, and I’m talking about my writing journey with arthritis. So, it’s only fitting that I typed mine out with the title Arthritis Storytelling. So, here we go. Growing up, teachers would ask us what we wanted to be. I could never just give one answer. I sometimes wondered how my classmates in third grade already made up their minds. Like, one of my best friends in childhood, Susanna, one day after the teacher asked us the question, is she started with such conviction that she wanted to be a broadcast journalist. Now, a few days — now, a few decades later, she became exactly that. Then there was me, I wanted to be a paleontologist. I still do. Archaeologist, hairstylist, makeup artists, broadcast journalists reporting the weather — who else loves thunderstorms and tornadoes as much as I do? — an actress, lastly, a writer and author. But all these professions had one thing in common. You need to use our hands quite a bit. That never crossed my mind until, well, juvenile arthritis came into the picture at 18. 

Some rheumatologist told me I have rheumatoid arthritis because, well, I was an adult when I got diagnosed, but I still chose to be a Communications Major. One of the questions I was asked the most was not, “Don’t old people get arthritis?” but, “What do you plan on doing with that communications degree?” And I think that got that semi-figured out now in my 30’s. So, you see, I had two new ventures to go on. One, arthritis journey; and two, the college one. If you’re wondering how I pulled those two off at the same time, it was with a lot of patience, grace for myself, and using the resources at my college’s learning center for students with disabilities. But I started to question my path, once I started to get myself injections and see an occupational therapist. I would go to the hospital for close to six months straight to practice with nurses who were so unbelievably kind and non-judgmental. One of them who I saw the most. told me I should be a nurse, and I said, “Oh, really? Now you’re just saying that,” and she’s like, “No, really. Your 45-degree angle with that needle is better than mine.” Even my acupuncturist tried to get me to become one. An acupuncturist, that is.

I always had an interest in the health field so I wondered, “Should I change my path? Is it too late?” When my occupational therapist looked worried when I told her I’m writing quite a bit in college, I also again, questioned myself. But I don’t blame her because it was her job to protect my hands, and my elbow, and my upper extremities that were quite damaged from arthritis already. But see, the thing is, we use our hands with any job we do. Once 2016 came around — the worst year ever in my opinion next to 2020 — and I underwent a total knee replacement, something clicked inside me. It was as if that solitude and alone time after something so traumatic and profound needed to happen to bring me on the path I’m on now. To have my creativity flourish, more than ever before. Even with various joints in my body being damaged by quote-unquote ‘hurricane arthritis’, I still have managed to do something with my degree, and something most importantly that I love and enjoy. I have close to 12 picture books that I’m working on, and other type of book projects that all have some relative message tied into arthritis, chronic illness, and disability, all with arthritic hands and tone. So, my limitations may limit me sometimes, but if I can work around them, I will continue to do so. And that’s my moral of the story for all of you too. 

Cheryl:  I love it. Yeah, and Effie has great YouTube channel, blogs, yeah, Rising Above RA. I cannot wait for your children’s books. I just cannot wait. 

Effie:  Thank you.

Cheryl:  Yay, thank you so much. And then now, we’re going to hear from Ushma!

[46:20 – Ushma Sampat – how RA affects family relationships and life partnership / marriage]

Ushma:  Hi, I’m Ushma, and I just wanted to share a little about how AS affects — so, I was diagnosed with Ankylosing Spondylitis when I was 18. And that was 13 years ago, so I’m totally giving up my age here, but 13 years ago. My brother got diagnosed with AS a couple of months before I did, so my diagnosis journey was way easier than his. It took him about — I want to say two years, he was in Australia alone. We were in India. I’m now in the States, but my parents went out with him. He didn’t have any friends, family taking care of him. He was crawling and stuff like that, so it was really hard. He had the hard way. I got really lucky because he got diagnosed a year before me, so the minute I was having morning stiffness and complaining, “Mom, I think I’m not able to walk,” or, “I’m having difficulty with stuff,” my mom picked up right then and she’s like, “Wait a second,” and I was in grad school when this happened. So, I got diagnosed way easier, but I can’t believe how much we all share in common. Getting diagnosed young, being athletes, becoming dependent in getting up and daily activities, just like it’s unreal how much we all share in common.

I just wanted to talk about how relationships do get affected. It’s a huge deal. I got diagnosed when I was living with family — I mean not living with family, but my mom was my caretaker or whatever. The negative was AS being a genetically, you know, you have HLA-B27, you’re positive. My parents often felt responsible. They felt guilt, they apologized, my mom was caring for me. And I was telling her everything about my journey, and she would innately feel guilt, which made it —it was a double-edged sword. She’s taking care of me, I need to tell her everything, but at the same time, she’s feeling guilt from all of these emotions. The positive coming like, she was my biggest advocate, you know. She was almost like my case manager. She knew where I needed to be, what medication I need to take, what needed follow up, how it’s all gonna be. She kept tabs, like things like how one thing is affecting me with another, my body was doing it, she heard it, and she made assumptions, then she figured, which I didn’t. Which was just amazing, like just having this person outside of you being able to be so in tune with you. So, that’ goes to speak of, you know, volumes of relationships, and what they can do for us.

In terms of friends. There was a lack of education. I often heard things like, “So, you’ll never be fine? How’s your back by the way?” and I’m like, “Uh… It’s way beyond the back, but really, okay, my back’s okay,” you know, I would often just brush it off, like my back’s okay because it was actually my foot at the time. But they’ve also been my biggest friend when I was in grad school unable to wear my pants, get up from my desk, or write my papers. My friends did it all for me. So, yeah. 

Coming to the most important, my spouse. I was in my first and worst flare right before we got introduced each to other, started dating. A year later, we got married, and I couldn’t walk on my wedding day. I was in the worst flare of my life. The first and the worst. It was very interesting, because he has never seen anybody with a chronic illness before. He’s not lived with anybody, it was a whole new world for him. I had moved countries with him. So, all of a sudden, I had new responsibilities of a partner, having to live by myself with no mom around to help me anymore, and coming with this baggage of the worst flare of my life. Getting medicated, medicines not working. Being completely new to the, you know, medical system in the States, having to figure all of that out myself with obviously his support, and going through medical rotations, finally getting — being on injectables. And, three, four years later being off them, thank goodness. 

But he went through a phase of over-helping, like, “I got this!” and he will carry my bag, and he’ll carry something else, and he’s got like, now he’s got the kids. And I look at him like, “Do you see yourself here? Like, I can do it,” and for anybody who knows me, I’m an occupational therapist myself, and independence is really important to me. And I am like, okay, I don’t know where to go. There are times when I can’t do it, and I’ll just ask for help. And there are times when I can do it, and I just want to do it. Like, I don’t want you to be taking over, right, like asked me where I need that help. But it’s hard because they’re not living it. 

I look back and laugh now because it just tells me how far we’ve come in our relationship and our journey, but there was a time when my husband just like — I would argue with him, like, “I got the bag, I got this. I can do this.” And he was like, “Can you just walk properly?” and it pained. It pierced me so bad in the moment. But I came to reflect and understand that he was just — the intention was, just take care of yourself. I’ve got everything else. But in that moment to me, it was like, “Are you really asking me to walk properly? Does that really matter right now?” And obviously, you know it’s not been as smooth as that, I mean, we’ve had so many fights. “It’s been nine years now we’ve been married, you should know this by now!” but he doesn’t, because he doesn’t live it. He sees me living it, but he’s still not — it’s not in his body. You still need things. He’ll ask me questions and I’m like, “That’s a stupid question,” but I’ve come to realize that it is me and my life, and he’s been very clear and articulate that, “Hey, listen. I don’t live with this, it’s you that lives with it. If you communicate and help me understand this better, I will be best able to support you,” and now he’s learned to support me the way I need the support, instead of the way he thinks he needs to support me. 

So, just huge growth, starting with never having seen anybody with a chronic illness, and me figuring out my chronic illness along with him, and he being in that journey with me. I reflect back and say that I should celebrate, and maybe many of us will have reasons to celebrate even though it doesn’t seem like the perfect support that we want, need, or whatever else it is. We need to sometimes be mindful of the fact that our family, our relatives, our well wishers, deeply care. And it goes back to perspective, education, and intention. And if that’s okay, I think we’ve got this. But I just wanted to say that there’s so much support for us as people living with chronic illnesses, and sometimes it’s just forgotten that people in near and dear to us are also living not as much as an affected life as us, or a dependent life, or a skewed life, or whatever else you want to call it; a different life. They’re not living it as much as us, but they’re living something that’s different, and there needs to be support for them as much as there is for us. My parents have never got the support, my friends have never got the support, and nor has my husband. So, I just feel like there really needs to be support over there. 

Cheryl:  Yeah, and they need to feel comfortable asking for help for themselves too, yeah. That’s a beautiful point. I know Cristina — who’s going to talk in a couple of minutes — and I have talked about this before too. So, such good points. Thank you so much, Ushma. Now we’re going to hear from Jes, House of Spoons. 

[54:50 – Jes Hosjan – How AS affects her experience as a mom and how she learned to advocate as a “spoonie mom!”]

Jes:  Hello! Yeah, I’m Jes from House of Spoons on Instagram. I just want to say it’s so nice to be able to interact and see you guys all in real life. Well, ‘real life’. It’s really nice to like interact on social media but it’s really cool we can, you know, see that there’s actual people on the other side of the lens. So, yeah, my name is Jes. I just came up on one year of being diagnosed with Ankylosing Spondylitis as well. My journey started probably 15 years ago, when I was like a pre-teen, teenager. I do have scoliosis, and I was a competitive figure skater, and we always assumed — my parents and I — that the amount of pain that I felt sort of all over my body was because of those, you know, a really taxing physical sport, and also just, you know, the misalignment in my spine. And I continued through my early 20’s relatively normally. After my first pregnancy, I really started to feel the effects of AS. It really started to come out. 

When my son was a newborn, I was getting morning stiffness to the point that I couldn’t carry him downstairs in the morning. I would have to stay upstairs for 15 to 20 minutes before I felt comfortable enough to pick him up and bring him downstairs. And I followed up so many times with my family doctor, my specialist, my OBGYN, just saying like, “Is this normal? What is going on here? You know, I’m in so much pain,” and I was reassured that all moms feel a lot of pain after they’ve had children. I had an emergency C-section, and so that was sort of chalked in with just the healing and the recovery. I was put on antidepressants for a little while to help with the pain, but that those didn’t work for me. And, you know, I was a new mom, I was struggling, I had postpartum anxiety, and I didn’t have the tools or the resources, and our chronic illness community wasn’t, you know, four years ago, wasn’t quite what it is right now. So, I was kind of just lost and muddling through my life. And nine months later I became pregnant with twin girls and unfortunately we did lose one of our daughters, and that sent me into really deep grief. And so, when I delivered our surviving twin, I had the same symptoms sort of appearing, a lot of pain in my feet, fatigue, all of the just telling tales of arthritis.

And it was then when I looked at my — he wasn’t even two yet, and my newborn, and I just thought, “I don’t have a choice. I have to fight, and I have to find support, and I need to know what’s wrong.” This isn’t pregnancy. None of my friends who’ve had, you know, normal pregnancies have felt this way. There has to be something more going on and that’s when I fortunately got a family care physician who really just prioritized my health, and really wanted to work with me the best that she could. And so, I did get a referral to a rheumatologist, who essentially just took a look up and down at me and said, “There’s nothing wrong with you, you don’t have anything wrong with you. We’ll send you for X-rays, but there’s nothing going on here.” And I was, you know, at the point, I had my daughter who was six months in the appointment room with me, and I was just, I had driven two hours to me appointment, and I just couldn’t believe that I was being completely gaslit. 

And so, that’s when things really started to change, and I really started to get feisty, and I started to learn how to stand up for myself, which is something I knew the entire time that I needed to do. So, I went back and that’s when — that was the day that I started requesting for all of my reports, all of my bloodwork, all of my MRI’s, I want a copy of it and I’m going to look at it. If you don’t want to advocate for me, I’ll advocate for me. So, now I have a giant stash of my medical records, and it was through that that I actually found out that my X-rays required a follow up MRI. And because the rheumatologist felt that it wasn’t rheumatology related, even though it requested for an MRI, they denied it. But because I had intercepted and I had the copy of that X-ray, I went back to my family doctor and we pushed, and we did get an MRI, which led to my diagnosis, which was amazing. And it was shortly after that that I stopped seeing that rheumatologist and went to somebody else. 

And, you know, I’m really learning. And to echo what Jed said, I have a rheumatologist that I can call the shots with now, and I know what works best for me, and I can help facilitate the doctor to facilitate me. Sort of with all of that, I found the chronic illness community, and [pause] — sorry, I’m just making sure you guys can still hear me because I don’t know if these are gonna die or not — I started to use the words ‘chronic illness’ and I started to realize and connect with people who also had arthritis, and realized that I am not a normal person and there’s nothing wrong with that. I do have extra needs. And through that I started my account which is @HouseOfSpoons, and I’ve made some connections that have changed my life. It sounds corny, and it sounds silly, and it’s strangers on the internet but it’s been life-changing. And a part of that is me showing my life as a mom of two young toddlers — my kids are two and three right now — and it’s hard, it’s really hard. Toddlerhood and just being a parent is very physically taxing. 

I didn’t have the diagnosis that I wish I had before I had children, to better prepare myself or to just understand what was going to be expected of my capabilities. But luckily I met so many wonderful people and, you know, I have been put in this light where, you know, talking about having kids is something that’s just so taboo in the chronic illness community. I think we really see a lot of boxes where we don’t really see people who are chronically ill and suffering with arthritis as successful athletes or as bakers, or, you know, it’s so nice to come into this community and immerse all of us into our illness, and really show how we manage each day. So, I have so many people that I connect with and I hope people enjoy connecting with me, and see how I navigate through parenthood. I’m absolutely doing things wrong every day, and I’m right now deciding whether I should save up for college or for therapy for my kids, so if anyone has suggestions, I’m taking those. It’s so nice to chat with you all. 

Cheryl:  Thank you so much. I just, my heart goes out to just everyone, including myself, who did not get their diagnosis as quickly as they should have or who’s experienced that medical gaslighting. It takes a lot to process that afterwards. So, thank you for sharing your story. Mimi is asking about how we can find community. I know that a lot of us have connected on Instagram and Facebook. So, if you have one of put in the comments some of your favorite communities or hashtags that you’ve found that have been helpful for you, that would be great. And then we’re also going to hear next from Cristina, also a mom, but with rheumatoid arthritis. 

[1:03:02 – Cristina Montoya – Humorous take on life with RA

Cristina: Hey, Cheryl and hello everyone. And it feels like I’m the Latina here, right, like I’m representing the Latino community, so,  hola, everyone. So, I — let’s see, I was diagnosed with rheumatoid arthritis also almost 17 years ago. I’m Cheryl’s RA twin. And I also have Sjögren syndrome, but that one I had it since I was a kid, but it was diagnosed when I was diagnosed with RA. So, Sjögren syndrome is one that is not really as recognized, I feel, is really this mess that bothers me, upsets me. But, here we go. That’s why we’re here as a community to advocate for ourselves. Then I was given this task to make, how we can make our life humorous? Can we find humor in our illness and our journey? And you know what? Yes, we can. Why not, right? My family — I’m from Colombia, I was diagnosed in Colombia — and we didn’t really have a supportive community. In fact, they Arthritis Foundation was in a third floor with no elevator. And so, I was like in a flare up, and then I’ll need help, and it’s like, “Oh, go out to the third floor,” and it’s like, “Really?” So, that’s how really, like, the resources are not out there. And when it comes to like the Western communities, or North America, or Europe, I think we’re more blessed to have access to more resources than we have in third world countries. So, I think I just wanted to kind of add that there. 

So, why not begin with a little bit of how my life kind of twisted with RA. Let’s begin with dating, right, like, don’t you use your skills to flirt? I do. And so, you know — oh, my goodness, I’m sorry, my toddler is up. He’s looking for Mama. 

Cheryl:  It’s okay, it’s okay.

Cristina:  So, here we go. As a Latina, I think we’re known to be flirtatious anyway, so why don’t we use our skills to get the guy next to you and say, “Hey, papi. Would you open this bottle for me?” Isn’t that sexy? And then I don’t have to really work hard to open my bottle. Online dating. Come on, that’s like a blessing in disguise for people in the chronic community. We don’t have to dress up like, really, maybe just the face make-up, and a shirt, and it’ll still be like a pajamas on the bottom, and we can do online dating, right. And we don’t have to stress out; oh, my God, I had to go get dressed, get a cab, and that’s how I really met my husband. That was like 15 or 18 years ago when there was like a Yahoo! chat. There’s no any online dating, it’s like a Yahoo! chat, believe me. Probably some of you don’t even know about that, in dial-up style. So, that really helped because in a way it helped to build that relationship with my husband, and it was more about that conversation. When we met, I was diagnosed, so he’d always known me with a chronic illness. 

So, I really relate relate with Ushma, because my husband is from a Pakistani family. So, there you go. I got my bole chudiyan. Oh, my goodness, I had a Pakistani wedding. So, I was not prepared for a Pakistani wedding entirely. It was three different ceremonies, three different outfits, hundreds of people I never met in my life. I was like — [huffing noises] inside, it just built up. So, here it is. I felt like a princess. I don’t deny it, it was beautiful. But what my husband didn’t tell me is that I had to go to each of the guests house every weekend for a dinner, I was like, what the heck is this? What am I gonna do? So, that’s where RA came in as a blessing, because by the end of the week, and I was so tired and so sick, I said, “I’m so sorry, I can’t do it.” When there are times where I couldn’t really say no. But then I kind of fell asleep because everybody was speaking Urdu, and I was like, hm? I don’t know what you’re saying, and then I kind of snoozed. And then I could hear the background saying, “Oh, you know, she has arthritis, she’s sick,” and in the meantime I was like, “Thank God I don’t have to be part of this conversation.” So, one of those things that like just kind of come along with that arthritis, so that was really a blessing in disguise. 

What about, let’s talk about when people wish you good luck, and they always say, “Fingers crossed.” I have the best luck in the world. All my fingers are crossed, so, why not. Another thing. My boys’ favorite song is ‘Itsy Bitsy Spider’. And I wish I could buy a little stuffy, like a spider right, but why would I spend 10 or 20 bucks when I can do it with my hands. “Itsy bitsy spider, come up the water spout…,” right? “Down came the rain…” you know, it can really save you some bucks there. What about the best. [Laughs] When you get excited, and I finally find my twin hand. Have you heard that? From ‘Friends’, I don’t know if you’ve ever watched it, but then it’s like a, “I find my twin hands,” it’s like, “This your your head. Oh, this is my head,” and I get so excited when I see someone with the same hands. And this is really what I had to cut to take it lighter, right, they’re not going to change. This not gonna go away. So, how can you just kind of live with it and find a little bit of humor? 

And so lastly, aren’t you lucky when you live with chronic pain, and you can legally vape pot, and nobody’s gonna criticize you? Really, seriously. Like, you have cannabis, and you can talk about it, and it’s like, “What? You’re doing cannabis?” I say, “Yeah, I have arthritis”, “Oh, yeah.” So, those are really the perks of leaving with rheumatoid arthritis, and chronic pain, and coping with humor while you live with it. So, thank you very much. 

Cheryl:  I’m sorry, I’m like crying. I’m laughing so hard, really, that was awesome. Thank you so much, Cristina. And if anyone needs to leave early, I know we’re kind of — we’re going a little over time, but I booked this for an hour and a half in terms of the webinar so, we still have two more speakers left, Krista and myself. So, Krista, it’s your turn. 

[1:10:17 – Krista – Her experience chasing a past life to be the same “pre diagnosis” and how she learned to embrace the present]

Krista:  Thank you, Cheryl. I’m so appreciative for all of this, and all of the speakers as well because there’s so much similarity yet difference, which I think is what we have to appreciate, right, that it’s not really one size fits all. There’s a lot of common elements but there’s still a lot of difference. So, what I wanted to talk about today was the concept of ‘chasing’, because one of the shifts that I’ve had to make in my journey living with rheumatoid arthritis almost 22 years now is a concept of chasing my old ‘well’ self, and facing the wrong direction. So, this, specifically because of chronic illness, I’ve experienced the feeling of wanting to go back to the person I was pre-diagnosis. Even though growing up is scary sometimes, I’ve never even thought twice about going backwards in life when I was my pre-diagnosed self. It was always who do I want to be, and what do I want to achieve, and it was always looking forward. 

Just prior to my diagnosis at age 29, which was in 1999, I was achieving the status quo of the definitions of success. I was looking forward, I was engaged, I had just bought our first house, I was starting a new job, and I appeared healthy because I was athletic. And then all of that changed overnight. I went to bed one night in January 2000, and I was living the dream of achieving all those goals I just spoke of, and then I woke up the next day in a complete head to toe flare, which some of us have described experiencing as well. I couldn’t move, I couldn’t get dressed. I thought I was having an allergic reaction, and literally hobbled in the snow in flip-flops to the doctor in January. Thankfully, he recognized something was up. It wasn’t an allergic reaction. And two weeks later, I was diagnosed with rheumatoid arthritis, which in hindsight — I was achy, but I attributed it to working out too much and I had no concept of what chronic illness or rheumatoid arthritis was. 

And at that time, there was no one like me. We don’t have the familiarity — and I’ll say the unfortunate familiarity because it’s so rampant now — but when I was diagnosed, I didn’t have any resources other than the Internet and my rheumatologist telling me that I was going to probably be disfigured in a wheelchair within five years. Every facet of my life was affected; socially, mentally, emotionally, with family, friends, and work, which we also heard about. And that further fueled anger, and fear, and resentment, and desperation, and all my energy was, “Oh, my God, how do I get back? How do I go back to that person that I was?” So, 10 years ago into my diagnosis, a shift appeared of what was actually possible. I started a new medication, it was a biologic that gave me a glimpse into what possibilities could feel like. And although that would eventually fail, it changed my perception of possibilities, and what I wanted to strive for. That it wasn’t the person who I was before my diagnosis, but now I had a vision and a shift of being the person that I wanted to be, which was a better version of myself. 

So, I celebrated that event of regaining mobility. Regaining mobility was something very similar to the Jingle Bell Run actually, Cheryl. I went from not being able to walk five steps to walking 10 kilometers in the Honolulu Marathon at Christmas time with over 100 people in my team Ontario — I’m from Canada — who were also affected by arthritis in some way. Either they were directly affected or it was a family member. I was 40 pounds overweight from not being able to move. I was definitely not athletic. But despite all of that I had made progress, and all I could see now was progress. Since then, I’ve experienced a lot of peaks and valleys of progress. But the biggest takeaway has been to stop chasing the person that I was, and start embracing the person I can be. 

And I now see my journey as a collection of wins. Small wins, big wins, and progress, and I no longer feel like I want to go back. I’m now more excited about possibilities and opportunities, and the setbacks no longer scare me. I just keep facing forward, and I just do my best, whatever that looks like. And I hope the best for others, that they also feel that they are enough in just doing their best. So, I will end with saying this, never say never because this gets hard. There’s going to be times where it gets really, really hard, whether you’re afflicted yourself, or you’re a family member watching someone go through this. It gets hard, but it doesn’t stay hard. Again, peaks and valleys, ebbs and flows, and you have to believe in those possibilities. I went back to school when I was 45 — I’m now 50 — I went back to school when I was 45 and became a holistic nutritionist and health consultant. And now I focus on educating on mindset, and stress, and diet, and movement, and lifestyle to help other people in their journey to not only believe but achieving quality of life and possibilities for themselves. It is really important to believe in those possibilities, face forward, know that there are things in your control that you can work on. And just keep going for it. That’s it, thank you. 

Cheryl:  That’s beautiful. And if you are not following Krista on TikTok, she is incredible. She brings awareness to how dance is movement, and it should be obvious, but —

Krista:  Dance is a collection of movements. 

Cheryl:  There we go, sorry. I was like, I forgot. And she just brings so much joy to expressing yourself through dance. It’s just been really fun and you’re able to bring awareness to rheumatoid arthritis without being didactic, like, “Hello, rheumatoid arthritis is blah, blah, blah,” you’re dancing and showing how helpful movement is.

Krista:  Talk about never say never. The one thing I never thought I would be ever doing was dancing on TikTok, teaching dance to others. [Laughs]

[1:17:44 – Cheryl Crow – My journey to acceptance of discomfort and uncertainty in life, how ACT (acceptance and commitment therapy) and my two therapists helped me!]

Cheryl:  She’s amazing. I’ll just go with my story really quickly. It really dovetails with really everyone, but especially when Krista was talking about looking at — learning how to not look at the past and not look actually too much to the future, but learning how to actually accept the present moment, which is what I’ve learned through my two therapists. So, if you’re really, really special, you get two different — you get a psychologist and a psychiatrist! I’m going to teach you something that I learned from — I’m gonna tell you my biggest lesson from my psychologist, Amber, and my biggest lesson from my psychiatrist, Dr. Matthew Hopperstad. He’s amazing. He’s not on any social media, he’s like — he and Amber, they’re both like the most shy people that wouldn’t want attention brought to them, so I’ll be sure to send them this video so they can be embarrassed. No, so they can know how amazing they are. 

So, what I learned from Amber is there’s a difference between solvable problems and perpetual problems. And I think if you’re a problem-solving type of person, which many of us are, we’re gung-ho kind of type A, you think, “Well, no, and I can solve any problem. I’m going to climb every mountain, solve every problem,” and she used to do research with Dr. John Gottman who’s a world renowned marriage therapist and, and he studies — he’s the guy if you’ve ever heard of this, he can predict within observing a couple talk for 15 minutes, he can predict whether they’re going to be divorced in 10 years with like a 90% accuracy based on different things. But one of them, the things they recommend for marriage therapy that works also for just regular stressful situations is identifying what are your solvable problems versus perpetual. 

So, solvable ones are ones that have a solution, go ahead and solve them. And then the perpetual ones are ones that are going to be expected to be there the rest of your life. I think a lot of us when we first get diagnosed, we tend to think, well this is just my little problem and I’m just gonna figure out the solution, and then I’m just gonna move on and solve it, right? So, okay, got to figure out the diet or figure out the medication and just, you know, check rheumatoid arthritis off my box. But what she really helped me accept, that RA and rheumatoid arthritis and the uncertainty that comes with that, is a perpetual problem. It’s actually, if I approach it like a solvable problem, I’ll be chronically disappointed because I keep not solving it, because it’s still there. So, chronic disease means perpetual disease and that doesn’t mean that I’ve failed to control it, or that I failed to solve the problem, it just means that that’s the nature of the beast. 

And so, that was just a beautiful thing that she helped me, taught me, over many, many sessions, where I was like, “But why? Why can’t I solve it?” Anyway, she’s just very patient. I don’t know how therapists do it because I don’t think I’d be that patient. I’d be like, “Lady! I’ve told you five times!” So, I’m like, “You’re so diplomatic,” and I’m so bad I’m always like, “How do you really feel about me?!” I’m like, so inappropriate. Anyway. So, because I’m so fascinated by doing that job, how they do that job. Okay, so, then Dr. Matthew Hofferstad, he is an OCD specialist and anxiety disorder specialist. I was referred to him. I made a lot of progress with Amber, she was wonderful and she’s a general therapist or psychologist, but sometimes if you have a problem that’s not responding well to traditional therapy, it’s okay to go to somebody who — a different person. Because just like with different rheumatologists, sometimes different therapists help. 

So, what I started having is — and this is a whole ‘nother story, believe me, I won’t quote it on the whole thing — but I had a really, really bad claustrophobia and cleithrophobia, which is fear of being trapped. So, it’s different than claustrophobia. That was worse than my claustrophobia, but I had both. I started feeling trapped in my body when I would feel pain, or from my rheumatoid arthritis, or my GI issues that I was having; the severe bloating, and early satiety, and appetite loss. I felt just like — I kept having this vision of like, I just want a body transplant. I want to get out of this body, but I can’t get out. Like, I can’t get out. I can’t get out. I’m trapped in my body. It was really, really scary. And so, he’s an OCD specialist, and what I found fascinating — so, I didn’t have OCD, but I started having some kind of compulsive behaviors in the claustrophobia situations — and so, what I learned, the way to get around it is through something called exposure therapy, which sounds terrifying if you have a phobia, because it involves exposing yourself to it.

I was like, “This is terrible. This is a terrible idea. Whoever okayed this idea?” but it turns out that if your phobia is something that is out of proportion to the actual threat which is, you know, my body is a threat to myself in that my, um, you know, I have an autoimmune disease, but it’s not life threatening in every single specific moment. And my brain was thinking it is. My brain was thinking, there’s a tiger attacking me or, you know, my inflammation is the tiger. So, long story short, when I first started talking to him, I was kind of trying to brag to say like how good I was at avoiding all my triggers. So, I was like, “Oh, I’m really good at like — I do all these things,” and then he said, “Oh, it sounds like you’ve gotten really good at avoiding your triggers and controlling your life so you don’t have to experience discomfort,” and I was like, “Yeah, I’m amazing,” and he goes, “No, that wasn’t a compliment.” I was like, “Oh, What? What kind of therapist are you? This is the weirdest thing.” He’s like, “No, because you’re avoiding uncertainty and you’re avoiding discomfort, and that’s not going to serve you, because life is uncertain and life is uncomfortable,” even if you don’t have rheumatoid arthritis, no matter what.

And I think the pandemic has shown everyone that, right, that you could have planned your perfect year of 2020, and life throws stuff at you. So, certainty is an illusion and being able to accept — so, he taught me this approach, Acceptance and Commitment Therapy, which if you haven’t looked it up, this is so much better for me in my life than Cognitive Behavioral Therapy. Really, it has some similarities to Cognitive Behavioral Therapy, but it is better for me in chronic illness because it’s not about arguing with your thoughts or saying, “Oh, is it a distortion or is it not?” like, are you catastrophizing or not. It’s just saying, “That’s just a thought.” You just learn to acknowledge that what you’re having is a thought. And then you say, “Well, what’s important in my life right now? How can I engage in that kind of despite this thought.” So, there’s a lot of metaphors I like to talk about with Acceptance and Commitment Therapy, and the one that he taught is your thoughts are just passengers on the bus. 

So, that thought I was talking about being trapped in my body. That’s a thought, it’s not a real. It doesn’t mean — it could be true, it could be not true, but it’s just a thought. And then I kind of acknowledge it as a thought, and then I can continue to say, “Okay, what else do I need to do today,” you know, not get caught up in what they call a struggle. You try to turn off the struggle switch so you stopped struggling with your thoughts. So, that was my wonderful experience with therapy and it’s really, really helped me. If anyone is — I’m just a big mental health advocate — if anyone is struggling, and thinks, “Oh, but it’s not so bad. It’s not that bad, I can handle it,” right, because we get so tough, “I’ll just handle on my own, I don’t really need a therapist. It’s not that bad,” you know, I really wish I’d done therapy earlier.

That’s me, and thank you all so much for being here! Everyone can unmute themselves now if you want. Does anyone want to say anything else? 

Speaker:  Thank you for organizing this, Cheryl. 

Cheryl:  Oh, thank you! I wasn’t trying to fish for compliments, but thank you! 

[Ending music]

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online course that I created from scratch to help people live a full life with rheumatoid arthritis, from social and emotional aspects of coping with rheumatoid arthritis, to simple physical strategies you can use every day to manage things like pain and fatigue. You can find out more on my website, myarthritislife.net, where I also have lots of free educational resources, videos, and more.