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Patient Stories, Podcast

What’s it Like to Live and Work with Axial Spondyloarthritis? Stella Levy’s Story

September 1, 2023
56 min read
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Episode Summary

Stella shares her journey of being diagnosed with axial spondyloarthritis at 15 years old, navigating various treatments, and other experiences while living with this chronic rheumatic condition. Stella and Cheryl discuss the complex dynamics of relationships, including with friends who may not fully understand the daily struggles and with medical professionals who sometimes overlook aspects of mental and emotional well-being. Stella reflects on the practical benefits of using mobility aids to maintain daily routines, and opens up about the discomfort of self-consciousness that initially came along with this.

Cheryl and Stella delve into the concept of how adaptive equipment also serve as a visible identifier for others to acknowledge otherwise “invisible” conditions. They emphasize the necessity of advocating for oneself, seeking alternative treatment options when indicated, and embracing accommodations and aids when they improve one’s quality of life. They highlight the importance of self-acceptance and prioritizing health, as well as the influence of societal expectations and rights for workplace accommodations.

Their conversation underscores the significance of having support networks, such as online in a Rheum to THRIVE group with individuals facing similar challenges as a source of empathy and empowerment. It is possible to experience joy in life despite the limitations of chronic illness, especially with a community that can support you in your own journey.

Episode at a Glance

  • Navigating Diagnosis and Treatment: Stella shares her journey of being diagnosed with axial spondyloarthritis at a young age and the challenges of finding effective treatments. Cheryl emphasizes the importance of advocating for oneself and seeking alternatives if a treatment is not the right fit.
  • Using Mobility Aids and Devices: Stella and Cheryl discuss the use of mobility aids to help manage the impact that symptoms have on daily life. Stella highlights how using a cane helped her receive better care and awareness, while Cheryl mentions the benefit of finding tools that reduce the impact on joints and make tasks easier.
  • Reclaiming Identity and Self-Expression: Personalizing mobility aids and turning them into accessories can help them feel more comfortable and reduce the stigma associated with them.
  • Internalized Ableism: Their conversation brings up the topic of internalized ableism and emphasizes the importance of challenging these perceptions.
  • Self-Advocacy and Communication: Stella and Cheryl discuss the necessity for advocacy when interacting with healthcare professionals. They encourage being thorough about symptoms, side effects, and concerns. Additionally, they recommend taking notes, bringing a friend or support person, and having a list of questions ready during appointments.
  • Knowing Your Rights and Accommodations: Stella talks about obtaining a letter from her doctor to protect her rights in the workplace. Knowing legal protections for people with disabilities can be essential in navigating work environments and seeking proper accommodations.
  • Finding joy despite limitations: Despite the challenges of chronic illness, Stella and Cheryl emphasize the importance of seeking joy, pursuing passions, and participating in activities that bring happiness, including using adaptations and coping strategies when needed.
  • Community and Support:  Stella and Cheryl discuss the value of being involved in a supportive community, such as Rheum to THRIVE where individuals with chronic illnesses can share experiences, insights, and mutual understanding.

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:

Stella Levy

Stella Levy has been living with reactive arthritis in her knees since she was a teenager, which has been 16 years. She works on animated TV shows. She enjoys arts and crafts and staying physically active through aqua aerobics and yoga in her free time. Stella is passionate about advocating for the disabled community and loves to explore new ways to have adventures despite her physical limitations.

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:

Full Episode Transcript:

Cheryl (00:00:00):

Okay. I’m so excited to have Stella Levy today on the Arthritis Life Podcast. Welcome.

Stella (00:00:06):

Thank you so much for having me. I’m thrilled to be here.

Cheryl (00:00:10):

Yay. Can you just let the listeners know where do you live and what is your relationship to arthritis or chronic illness?

Stella (00:00:19):

Currently, I live in LA and I’ve had, I say ra, but it’s not, I have spondyloarthritis and I had it since I was 15, so I was first diagnosed with J R a.

Cheryl (00:00:34):

Okay. That’s right. And then how old are you now, if you don’t mind sharing or a range?

Stella (00:00:40):

Oh, I’m 31 now, so it’s been about 16 years with rheumatic disease.

Cheryl (00:00:45):

Okay, so you’re kind of like me where you’re at the half of your life point, because mine was 21 to 40. I’m now 41. So yeah, that’s a whole strange thing to wrap your mind around, but I would love to know your diagnosis story slash saga with spondyloarthritis.

Stella (00:01:11):

Yeah, I feel like it’s pretty long, but if we just do the spark notes of it and then kind of go through, when I was 15 and a half-ish years old, I got strep throat and then I took antibiotics, and then after strep, a week and a half later, my knee blew up and we went to the doctor and they were like, I don’t know. It went away naturally. And then I got strep throat again, and then my knee blew up again, and then I got a third time all in the same year within six months. And at that point it didn’t really go down anymore. So I think at that point I had a rheumatologist and we diagnosed it with j r a, started with Sulfasalazine, met methotrexate, a few others. I did an infusion, and then I think we settled on Enbrel. I was on Enbrel for about five years, but by the time we got to that, I think I was 18 years old, so it took about two and a half years of trial and error with different meds to get to the one that worked. During that time, I was on a heavy dose of Vicodin. I didn’t respond well to prednisone. So my memory of high school is a little hazy. And I think it’s also interesting, it speaks to the American healthcare system of how opiates were kind of treated differently. I don’t know if they would’ve still given a teenager, just never a bottle of 60 pills and just been figure it out. So

Cheryl (00:02:38):

At that time, no, that’s not best practice now at all. And because of the opioid epidemic, and I want to just say for the record, for anyone listening, the environmental triggers that are known for rheumatoid arthritis and these cluster of rheumatic diseases, they do include a virus. A lot of people do get an autoimmune condition after any sort of virus, whether it’s the flu or covid or strep. And I had recurrent strep as a kid too. I never thought of that literally until just now. But also it can be from family and inherited, not predisposition. And then other lifestyle risk factors like smoking, people who smoke are morally together. So I always put these little educational tidbits for people who are listening. Oh, for sure. But I’m sorry, you went through that at 15 to go from active and healthy to suddenly your knee blowing up. That must have just been

Stella (00:03:40):

Rough. Yeah, yeah. I don’t know if I even mentioned my impacted joints, but I only at that point had it in my right knee. So it really was just very localized, just my right knee. I walked with a cane, but it wasn’t until 2021 that it spread to both knees, both ankles. And then I also developed uveitis. So it was a very long time before it really got any worse. The Enbrel really kept it at bay. And then I think, so Enbrel was like five years, and then I was on Humira for five or six years. And for part of that we did it with methotrexate and then tried another four or five meds from 2021 or 2020 to 2022. And currently I’m getting Inflectra Remicade infusions every six weeks. And my diagnosis is reactive arthritis was in the Spondyloarthritis family.

Cheryl (00:04:39):

Okay. And that’s not one that I’ve talked to a lot about on the podcast. There hasn’t been too many, haven’t been too many. They both sometimes still get reactive arthritis and it goes away. It’s one of the few ones that can completely go away. Unfortunately in your case it hasn’t. But just in case anyone’s listening who’s like, oh, is this going to happen to me? It’s not guaranteed. If you have reactive arthritis, that’s going to progress. And so that’s a lot. And did you go to college during this time?

Stella (00:05:12):

Yeah, so during my college years when I was on Enbrel, I enjoyed college to the fullest. I lived a very active lifestyle. I worked out a lot. I drank like a normal college kid, not direct. You

Cheryl (00:05:26):

Weren’t on ate then? Yeah, yeah,

Stella (00:05:29):

Yeah. But just to be transparent, I definitely really enjoyed my college years and didn’t ever need aids and I didn’t feel limited by it.

Cheryl (00:05:41):

And sometimes there’s this silent majority if you’re on social media, you see a lot of cases of people with more moderate to severe disease. And sometimes it’s hard for patients to remember that there can be this potentially a silent majority due to the statistic well controlled with the disease is well controlled with methotrexate or with the biologic. That certainly represents my experience with Enbrel specifically. I know that if you’re listening, don’t necessarily assume that it will work for you if it worked for us. But I lived a very normal 20 something life when I was in medicated remission. So what did you study in college? I forgot. I know you a bit.

Stella (00:06:28):

I studied film, and then I’ve been working in film in V F X and animation for about a decade now. So

Cheryl (00:06:35):

Yeah, I know what you’re working now. Okay, that’s amazing. I want to talk to you about that more. But yeah, so right now, if you could summarize in terms of a graph of there was this initial mountain of challenge of the step and the knees blowing up, and then we kind of had a valley of happiness,

Stella (00:06:58):

Even going from Enbrel to Humira, there was only one or two blips of, I felt Enbrel not working with my system very quickly, switched over to Humira in less than a month. Obviously there was some slowdown of prior authorization with prescriptions, but it was very quickly, and Humira worked for me within six to eight weeks. So even that little flare was not too bad. At one point, I think in 2019, I broke a boat in my foot and then that caused a little bit of a flare because there was trauma in the leg that my RA was in. And so my body was like, whoa, what’s going on here? And I was very not surprised by that.

Cheryl (00:07:50):

No, that surprised me when I partially tore my MCL L on my left knee when I was playing soccer in 2005. So the two years after I got diagnosed and I was like, why is my knee blowing up? And my rheumatologist had to be like, okay, I’m going to tell you this. They were a kindergarten. I’m like, because you injured yourself, your joints aren’t happy. But I was like, ligament outside of the joint. I just got confused. But anyway, that took a while, but that was a localized flare that didn’t end up transitioning to a full body flare was just that one. Yeah, joint. Yeah. And so has it been hard with your kind of flares up and down now to do your job in film animation or animation?

Stella (00:08:37):

Mostly computer-based. I’ve been okay. I haven’t lost my job or anything like that, but I definitely would say 2021 if I didn’t have the employers I had, I probably would’ve. I think they were really patient with how often I had to go to the doctor and how much rest I needed. And probably that’s the blessing of just being at the same place for so long and having very considerate coworkers who really rallied around me. 

And I think one of my favorite quotes was a coworker and me just being like, I feel so guilty having to take a nap midday because I have so much brain fog and I have so much drowsiness. And he was like, do you think smokers feel guilty for taking their 15 minute breaks a few times a day? Why are you making yourself feel worse over taking a break when everyone else gets a coffee and they look at Facebook? You are being more clear about it, but everyone else is taking that time too. And that kind of clicked for me as well. It’s like, why am I making myself feel guilty for nothing?

Cheryl (00:09:43):

That’s an amazing coworker. That’s so nice. And I think that’s really helped normalize needing accommodations. We all need accommodations for different things. It could be that you’ve had a lot of a stressful day. It could be that you have a chronic illness. 

And I was going to say, so you have, and it does tend to affect the spine in the larger joints more than the small. So have your hands been very affected?

Stella (00:10:10):

My hands have not been affected at all, ever knock on every single word, but yes, knock on wood. But yeah, it’s axial spondyloarthropathy, reactive, axial spondyloarthropathy because it doesn’t, I have spondyloarthritis, but it doesn’t actually affect my spine. It affects my knees and ankles, which is so funny. So I think that’s another one where the term is sometimes hard. So I frequently will still revert to RA since that was one of my original diagnosis and I had that for 15 years. I only in the past year got a more formal diagnosis of the specific rheumatic disease I have.

Cheryl (00:10:53):

So honestly, I had to make charts for myself when I was learning about, because I knew a lot about rheumatoid arthritis. But then when I started making Rheum to THRIVE a program that would really address all the rheumatic diseases, not just rheumatoid, I had to make these charts for myself to remember. It’s confusing. Yeah, you think spondyloarthritis does tend to affect the spine, but it can affect the periphery as well. So I’m going to put a link in the chat to this excerpt from the course that I made available on my website that’s like rheumatic disease 101, and it has a little part that’s like spondyloarthritis and then peripheral versus axial. And the peripheral spondyloarthritis includes psoriatic arthritis. So I mean, I’m very visual, so I can’t just remember it off the top of my head. Most of the times.

Stella (00:11:43):

I think I send that image to my parents even now to try and explain it to them. They were like, you have this one. And I was like, well, it’s tree. We found out I’m one little branch of it. And I was like, but if you refer to the trunk, you still got the tree. Even if you got the branch, it’s okay if you don’t have the little twig and leaf. We’re very close.

Cheryl (00:12:05):

Oh, that’s really sweet. I love that. And so looking to the bigger picture of how your condition has affected your life and relationships and job and everything, what are some of the things that have helped you cope with all the ups and downs?

Stella (00:12:26):

Yeah, I mean, I definitely think therapy, pain management, just things that allow you to be kind to yourself. For me, I’ve always loved art. It’s why I went to film school. It’s wine and animation. I love sculpting. I love painting. I love arts and crafts. So for me, it’s very zen and something that’s really hard, which I think a lot of people with these diseases struggle with is sometimes when you need that the most, you need to be able to do something. You need to be able to feel like you can do anything. That’s when your body says, no, no, no, you can’t do art right now. That’s definitely something that I feel like is still a fight for me is having my biggest support be something that frequently gets taken away when my disease is the worst. But I’m huge advocate for pool workouts. Fortunately, I live in California and there’s literally a physical therapy aquatic center like half a mile from me, which I’m the 1% in that regard. It’s so funny, the Elizabeth Taylor Aquatic Center, there’s pictures of Elizabeth Taylor all over the wall. She donated it because she had a family friend or something that had a disease where water workouts really helped. And so yeah, they go listen to you,

Cheryl (00:13:53):

And a lot of times people don’t even realize what’s in their area. I know that in my work as an occupational therapist in pediatrics, there were times that I’ve, I’ve seen or worked in places that offered aquatic assisted therapy in the local Y M C A, which there tends to be YMCAs in a lot of neighborhoods and suburbs and more urban areas. So hopefully people can find something, but even if it’s not an official physical therapy session that’s using aquatic therapy, you could also just, there’s something so sensory wise, comforting about being in the water for many.

Stella (00:14:31):

When I was 15, 16, I would do 24 hour fitness water aerobics classes for elderly because it was the only workout I could do. So it’s me and all these grannies just walking around a pool and I’m like, I’m going to be the fastest. I was still not the fastest, but at least I got to work out. I got to move everyone. The nicest to me, I think there’s a lot of fear about exercise in general and looking like the odd one out. No matter what it is. If you’re just an average looking person, you go to a gym and you approach a machine, or if you’re disabled and you approach something, there’s so much fear of rejection from fitness, and it’s one of those things that’s so hard because it’s one of the biggest things that can get you even 10 or 20% better while you’re trying to find those meds. I think each thing is a percentage of your success in your happiness. Like yes, meds are going to help, but diet and exercise and mental stuff, it’s all one big pie. You got to find your pie.

Cheryl (00:15:35):

Oh, I love that. It’s what the word holistic truly means. Not holistic as in alternative medicine, but holistic as in looking at the whole person. And I wanted to make sure I knew what you meant when you say pain management. Did you go to a pain management clinic or do you mean knowing your pain tools? Yeah. Okay.

Stella (00:15:58):

Yeah. I went in high school. I was in a group therapy pain management class of just, especially because I was on so much Vicodin and I was in so much chronic pain and I couldn’t take prednisone as a teen. It just ruined my hormones. Imagine teen angst plus steroids. I was fully nightmarish, couldn’t stand myself, couldn’t stand it. So yeah, I started pretty early on with a group therapy, like pain management class. But I think those tools have transitioned into my life permanently.

Cheryl (00:16:38):

That’s amazing. I know people, again, a lot of people think the only tool I have in my toolbox or the only providers that can help me with rheumatoid arthritis or spondyloarthritis are the rheumatologists and the rheumatology team, but there are so many others, so I’m always trying to highlight, okay, there’s pain management clinics, which they can have a physiatrist usually is the doctor in charge, which is a physical medicine and rehab doctor. And then they also have counselors, psychologists, sometimes occupational and physical therapists. And people often ask me, with therapy, therapy like counseling, mental health therapy, people will ask me, what are some tips for finding a good fit with a therapist? Because there’s people who’ve tried therapy and didn’t like, they just didn’t click with their therapist. So do you have any tips for that? I’m sorry I didn’t prepare you with that question, but I just thought of it.

Stella (00:17:30):

Oh my God. No. I would say keep looking. Don’t ever settle for therapists that does not understand you. When I first moved to la, I ended one of the first people that finally responded, you have to cold call over and over to get a therapist. It is very difficult. I tried, I think beyond health, the online one, it didn’t work for me. It is definitely a resource that is there for people, especially if you aren’t in a city where you can keep trying different people. But I ended up with this woman in Beverly Hills that was so wealthy, had no sense of stuff outside, kind of her little bubble that it was uncomfortable to talk to her. I just felt like nothing I was saying about financially struggling, moving here, feeling alone, being in pain, was registering in any way. And now I have a therapist who I go to, I would say once a year, and I call it a tuneup, literally.

(00:18:34):

She is the sweetest lady. She has two dogs. She loves her daughter and her granddaughter, and most of the time said, I’m being too hard on myself. And I remember once I went to her, and it was when I, in 2021 when my health had been so bad for so long, I’d gained 25 pounds on prednisone. I couldn’t walk. I had a walker. I felt like I was letting my husband down by not being able to be a whole person for him either, and went and talked to her and she’s just like, no, you’re going through a lot. You’re allowed to be sad. And I think it’s so funny how we really try and be like, well, how do I get out of feeling sad? It’s just like sometimes you just need to let yourself more in the fact that your life is really difficult right now and that some of it is temporary. But yeah,

Cheryl (00:19:26):

Truer words have never been spoken. I feel like as you were saying that, I was just thinking that’s probably the number one lesson I learned. Just you’re allowed to be sad. The game isn’t to go to therapy so you can learn how to control your emotions so you only feel happy and never feel sad. That is not realistic. That’s not what being a human is. And even think, well, aren’t there Zen Buddhists out there who were just super peaceful and zen all the time, but it’s even them, it’s like the whole point is that you actually, it’s hard as I understand it, obviously not some sort of zen master myself, but it’s about acknowledging and being present with everything that you’re feeling and not trying to control it and change it. So yeah, that was a huge mind shift for me in therapy. So I just love that yet you’re allowed to be set. It’s okay. Yeah, it’s like inside out. Everything comes back to the movie Inside Out, which I think represents that so well. Speaking of animation, I don’t know. I don’t know. So in the animated world, maybe there’s opinions within the experts.

Stella (00:20:34):

Oh, no, that was a good one. I definitely cried.

Cheryl (00:20:38):

Yeah. Yeah. What’s funny is I didn’t cry in the binging bong part when everyone else cried. I think I just more cried. I think it was so sad how her parents were not attuned to her emotions at parts. And I felt that 11 year old feeling and I was anyway. But you mentioned going to groups in the pain management clinic if you wanted to share anything, I always spreading the word about the Rheum to THRIVE group and what people find helpful about that, if you want to share

Stella (00:21:18):

It definitely exposed me to different tools to use. I feel like I knew my little bubble of things, but a encouraged me to go back to physical therapy. I was like, oh, I have it medically handled now. I finally found a med that’s working. I’ll be able to walk again. And I wasn’t really doing that quickly. And then  Rheum to THRIVEmade me ask for more help in the right places. I already had a wheelchair. I had the walker, I had the cane. I had some leg compression stuff, but allowed me to be like, what if we get a better can opener? What if we get a thing in the kitchen that I can stand on where it doesn’t hurt my feet as much? There were so many smaller things that I have in my house now that I wouldn’t have considered something that would’ve actually made my life better before.

Cheryl (00:22:18):

Right. Yeah, I mean that’s totally, you’re speaking my language as ot, we’re all about the gadgets and those small little changes that really add up in your day. And I know it sounds corny to say, but I always learn something from the people in the group, not just the emotional support and the connecting and the way people have framed their experiences around that. But also I learned just people’s own adaptations and tips. So I put my laundry in this rolling grocery thing that you could use for your laundry. It’s like, oh, I didn’t even think of that. So I think there’s this group wisdom that is really exciting for me to see at least. And it helps as we are talking about these gadgets and these daily living quality of life tools. It helps de-stigmatize them. You are like, oh, Estella’s Young and hip. She’s using these.

Stella (00:23:20):

Yeah. I think you also framed one of the chapters was about relationships with family, acquaintances, friends. And that also helped me deal with some of the rejection you eventually feel with being disabled is that some people aren’t going to invite you to the thing because they know you can’t come or they don’t want to see you leave early because you can’t stay the whole time. And some people in your life are just going to be more accepting of it than others. And some friends are there for you in the good times, and some are there for the bad times. And it’s okay that some of that’s different. It was nice to hear other people feel that rejection. Sometimes you feel so alone in it, you’re like, oh, it’s me. No one likes me. But it really is, unfortunately sometimes a factor of your disease and your status and where you’re at. And those things are fluid. They always change.

Cheryl (00:24:19):

Wow. Yeah, that’s so true. That’s so true. It feels personal to you when it’s happening to you because it’s in the context of your personal relationship to that person. There’s a thread connecting you to them. But then when you go into the group and you see that every single person in the group almost without a fault, has had somebody who no longer is able to or no longer wants to be there for them, they can’t handle it or they don’t know how to, or they’re oblivious. And then you realize, oh, this is not a me thing. This is a them thing or a society thing, the ableist society or yeah, there’s levels. There’s the obliviousness on one hand or the lack of understanding, and then there’s the outright, I’m actually going to try not to understand you at all, and I’m going to blame this on you.

(00:25:13):

And you just failed to think positive or Stella just failed to do it all naturally. And I don’t, I am not going to support her because she’s not doing it right anyway. And it’s not about you. Yeah, that’s so important. I had it both sides. I had some people, I have some friends that are actually find it easier. It feels like some people find it easier to be there for me. If things are going poorly, I know what to do. And then when things are going well, they’re like, I’m jealous. Anyway. Kind of interesting how there’s fair weather friends and then there’s weather friends, I guess you would say.

Stella (00:26:02):

Yeah, no, I definitely have that. There’s some people that are just, especially because I was having such a bad flare during Covid, there were some friends that just were very cognizant. They were like, Hey, my mom got sick and I saw her yesterday. I’m going to cancel plans today. And I was like, dude, do that. Thank you. I would rather that.

Cheryl (00:26:21):

Yeah, yeah, yeah, yeah. That’s so true. That’s so true.

Stella (00:26:26):

And the same person then can seem flaky when you feel better. It’s all perception too.

Cheryl (00:26:33):

Yeah. I was just thinking about how some people’s love language is also worrying about you to where you’re like, it’s fine. I’m fine now. Or I’m coping the best I can. So yeah, there’s such complexity to relationships. Yeah, I’m glad that the  Rheum to THRIVE. We definitely spend a lot of time in that section of the prerecorded course and then the support group talking through how things are going and how can we problem solve specific issues. And it’s like that zone of control. What can I control? What can I not control? And then there’s always that kind of messy gray area overlap of zone of, I call it the zone of partial control when you’re like, I can control how I say something which may influence the other person, but I can’t control their willingness to understand it.

Stella (00:27:39):

Also, why I like Rheum to THRIVE  is I also, I like being able to share some of the things I’ve learned over the past 15 years or 16, whatever, similar to you. I’ve had it for half my life. So there is a certain amount of just gross knowledge that you gain of just figuring out the system of getting care as well. And so for me, being able to help others and share some of that is so nice. It doesn’t just end with me.

Cheryl (00:28:09):

That’s so true. And people will often ask, well, is this just for newly diagnosed people? Or Why don’t you have one group for newly diagnosed and one for the veterans? And I do even have an F A Q on the website about that. And one of the reasons, first of all, initially it was just grassroots just starting out, and I was like, I don’t have enough people interested in this to make five groups, a rheumatoid group, an axial spondyloarthritis group, a psoriatic. It’s like we’re all together. But then as I’ve done the groups with people who are, maybe there’s a 60 year old person who has been diagnosed for two years, and then there’s a 30 year old person who’s had it for 15 years. And then, so it’s all different ages of life and stages of life and diagnoses that are within this kind of umbrella of rheumatic disease, like chronic pain condition.

(00:29:05):

It’s like it has the diversity of that has made it so that people get a lot out of it. The newly diagnosed might hear something from their rheumatologist that’s hot off the press or the new standard of care that maybe those of us who’ve had it 15, 20 years, our rheumatologists maybe aren’t up to date with that or forgot to tell us. But more to what you said is also the therapeutic benefit of being able to share, take your pain and turn it into someone else’s gain. Gain. Again, corny as that sounds, but you say, okay, hey, here’s how I learned to navigate insurance. Here’s what I tips along the way. So I love that. And I think definitely, this is just an observation, but really consistent across the rheumatic disease communities that I’ve been a part of online and in person, is that there are a lot of people in this disease population that are helpers that identify if I want to be the helper. And it’s hard for them to adjust to being the one who’s helped on the receiving end. So being able to help others within the group is therapeutic.

Rheum to THRIVE – mid episode advertisement

 And one of the other things that we talked about before starting to record is your journey towards using your daily living aids or using a cane without shame. So maybe a gloves, things like that. I would love to just hear your perspective on that.

Stella (00:30:42):

I really didn’t have a choice in using a cane when I was a teen. I didn’t have a driver’s license because I wasn’t of age, and so I had to take the bus and then walk a mile each way My parents worked. And so when I couldn’t do that, you have to figure out a way to do it. So yeah, early on using a cane was really important. And I didn’t lie about it. I didn’t say I’d broken something. I said I had a bad knee because I knew I learned pretty quickly just saying I had arthritis. People just respond. My grandma has arthritis, which everyone has experienced.

(00:31:22):

I called gimpy, I called limp, I got called cripple. You get teased, you’re a teen, but ultimately you get better care. And people are more aware. People would let me sit in the disabled section of the bus if I had a cane, and if I didn’t, they would think I was a punk teen trying to stop an old lady from sitting down Even. You just look selfish. People don’t know. They can’t see. And so having an aide is a visible marker for people that they do respond to. It’s unfortunate that it needs to be that way. I mean, obviously I have a handicap placard for my car now, but I am still always wary of when I use it. I know I look young and capable, so it’s always hard for people to believe that you’re not. But yeah, I’ve used a cane. I definitely use compression leg things even when I didn’t use the cane, because basically when my knee gets bad, it’s like a hundred to 120 milliliters of fluid.

(00:32:30):

It’s ginormous. Whoa. So I can’t stress how big it’s, so having a compression knee think basically keeps my kneecap in place. It will basically float out. It is not attached to a thing in the way your normal knee is. Yeah. But I learned that I couldn’t do a pull-up one pretty quickly because of how big my knee got. So I have, there’s four straps in metal. There’s so many different versions of different leg braces. I, I think the walker was almost harder for me to accept than the cane because the cane I’d been using for so long and I put stickers on it, and I have a mermaid one and I have a sparkly one I want. It’s an accessory. It’s another earring, it’s another necklace. When I use my eggs, I want it to look like me still. I don’t want it to look like why does she have that? But yeah. Oh, can you hear the vacuum?

Cheryl (00:33:34):

No. No.

Stella (00:33:35):

Okay, cool. Alright, let me know if it gets bad. Are you stopped being able to hear me?

Cheryl (00:33:42):

Oh, perfect. Perfect. No worries. Yeah, I love that idea of reclaiming the aid. I just put on my purple gloves as it was just splitting here. I kind of put them on and off as needed sub the day because it’s not a constant for me. It’s actually worse on the mornings, which is the typical pattern for ra.

Stella (00:34:03):

One thing I got from one of the people in our group was Biofreeze. Yeah. Amazing twins. Oh, one sec. My door open. I’m going to grab it.

Cheryl (00:34:13):

Yeah, no worries. So yeah, wanting it to look like an accessory is a wonderful way to reclaim it. And I think something that we do talk about in the group a lot, but honestly I hadn’t even heard of, I think until 2020 maybe when I was living my whole life on social media. All of my social participation was virtual. It was the idea of ableism and internalized ableism. So ableism is discrimination against people with disabilities, just like racism is discrimination based on race or ethnicity. And then internalized ableism is when you grow up thinking that people who have a disability are inherently less than or weaker or worse. And you internalize that idea and you think of yourself as worse if you need to use one of these things as opposed to just thinking of it. This is the classic example. It’s like you don’t look at somebody with glasses and think, oh, they’re so weak because their eyes don’t work perfectly, but there’s a stigma around all the other aids and gadgets, or this is very weird societal policing that can go on where they’re like, well, you parked in the handicapped spot, but you can walk.

(00:35:33):

It’s not the immobilized spot, it’s the disability thought, but it’s like good intentions gone awry. They’re trying to protect it for the truly disabled person without recognizing invisible conditions. So yeah, I think a lot of times people have a hard time going through that progression of confronting their internalized ableism on their own, but when they’re in a group setting and seeing other people think through it and come to those realizations, it’s like, okay, I get it now.

Stella (00:36:13):

And even once I had a walker, I found out ways to trick it out. I added a little cup holder, which you can add to a bike, basically. Oh, that’s awesome. And that was really handy because I just, it’s waking up in the night and wanting to get yourself a cup from the kitchen and you can’t do it. Being able to help myself in even small ways just made such a huge difference in my quality of life at home.

Cheryl (00:36:43):

Yeah, that’s so good. And yeah, if anyone’s on the fence right now, like, oh, I’m worried. First of all, it’s the same thing. I’ll tell ’em the same thing as I do in the group about friends and family not getting it. When people ask, what if people look at me weird? They probably will. Some people will look at you weird. They just will because humans are how they are. So go into it with that radical acceptance and knowing that I’d rather be comfortable and function better while using mobility aid, even if people were looking at me weird than suffer unnecessarily so worried about people looking at me. You know what I mean?

Stella (00:37:24):

And especially with those aids, you are preventing future damage walking on that leg that has a knee floating. You’re just going to get bones rubbing together. You’re going to hurt yourself more. And then the risks are so much higher. Just be embarrassed, be a little self-conscious, and you get over it pretty quickly knowing that if you walk a little bit weirder now and it’s more visible now, you’ll be able to walk better later. A lot of what I do is protect so that I can still explore and I can still do stuff later on in life and I’m not fully immobilized by my legs and stuff.

Cheryl (00:38:05):

Yeah, it’s really using daily living aids. Even in the small example, it’s like a kitchen life hack device for me, for my hands would be like the electronic can opener or the under counter jar opener. And it’s like those little modifications, instead of forcing my hand around the jar and opening it, I can use the under counter jar opener. Those little changes every day are reducing the wear and tear on those tiny little joints that can be kind of fragile at times when you have a rheumatic disease. So yeah, sometimes so few things we actually can control in our lives with these disease that’s control what you can and you are using these aids is something you can control if you have access to them and they can work for you. Some people, they don’t have access. It’s unfortunately these things aren’t covered by insurance. Sometimes, unfortunately. I just was about to make a sound. Anytime I hear the word insurance, I’m just like, Ugh. But another thing that I would love to hear your take on is tips for advocating for yourself. I know that is something that for many of us, takes many years to become a good self-advocate. What are some of your tips for that?

Stella (00:39:32):

Go in with a buddy or a list written down? Brain fog when you’re having your flare is so real that I’ll know I have a bunch of things I need to get through and I’ll get in that doctor’s office and I’ll 20 minutes and I’ll get through one. So definitely having my husband, having a list of notes written down, being like, I was eating this and it isn’t going well. Or is it the pills you put me on? Even some of those smaller things that don’t seem necessarily specific to the disease can be side effects. And taking pictures of yourself and the state you’re in. Sometimes a flare is a moment, it’s five days, it’s nine days, and you don’t see your rheumatologist for so long that then you go in, they look at your joints, you look great, and then you leave. So coming in with as much evidence as possible to back up your claims. It’s a weird messed up thing to say, but it’s very true.

Cheryl (00:40:31):

No, I wanted to just totally second that. And you can even take a video. So something that can help is if you have a lot of stiffness in the morning and you can take a video, I know I’m using the hands as an example, but of your range of motion. Say, look, this is as far as I can go comfortably and kind of push it maybe a little further. And that’s actually, I really wish I had taken more pictures and videos in the first few years of my condition. Then I would have them to refer back to. Now I actually have to find these incidental pictures to look at my toes because I do have deformities on my two of my right toes that are very, very visible. It’s always funny. People were like, I don’t see any deformities. I’m like, well, I’m not zooming in on my knees or my toes. My knees are not, don’t have any, but my fingers do. But people, it’s hard for the lay person to see the subtle differences. The point being, especially earlier on, even if you’re doing well, have those pictures for yourself to refer back to and your doctor on team.

Stella (00:41:37):

Yeah, I think sometimes, I mean my chart is great with communication. Now I have that through my doctor where we can direct message each other. If you’re not receiving the care or responses in the time you need, do more, they’re not going to remember if you wrote them a week and a half ago and you never heard back, someone dropped the ball, they’re not going to get to you. And I think sometimes I would just be too polite and I would sit and wait in pain for so long that by the time I saw the doctor, I was like, oh, I’ve been in a really bad place for a long time. Or I was on sulfasalazine. It was making me vomit. I was having a terrible reaction to it, but I didn’t have my scheduled follow-up for so long. And then again, I was 15 years old.

(00:42:26):

I was just like, oh, well this is the only med and this is just what I have to do to hopefully treat it and we have to try it for nine weeks. So I waited the nine weeks of vomiting almost every day until projectile. And then I was like, oh, by the way, I don’t know if it’s sitting well with me. And the doctor was like, how could you have not told me again? I was a kid, I just wasn’t. I thought that was my only answer and I didn’t think it would make a difference, which is the goofiest thing in the world. Whereas now the second something I’m over communicative.

Cheryl (00:43:00):

No, that is a beautiful story. And I think it is also hard because sometimes there are certain medications that you may have these bad side effects just for that initial couple weeks while your body is calibrating to them and they go away, but other ones they won’t. So communicating to your team and messaging them, especially when you’re not doing well. Anyway, sorry, just highlighting. That’s a great example. I’m sorry you suffered for so long. I’m such a rule follower. I did exact same way. It’d be like, okay, well they said come back in nine weeks. It wouldn’t even occur to me to be like, we could change that to five weeks if it’s going bad.

Stella (00:43:41):

But definitely everyone is different. It was funny, listening to her mental state with it is completely opposite to mine. I really like to know what’s our next backup. I want to know what are we doing now and what happens when it doesn’t work. But that’s because I’m at step nine of it not working. I want to know if what the next plan is. I want to have it in our back pocket of being like, alright, let’s shoot off the next prescription. Because in my experience, I’ve known so quickly when it’s working. But again, I think it’s just because the measurement of how severe my joints are is so huge invisible compared to hands and other ones where it’s you’re in pain and depending on your hand, you can see it more. You can see it less. I have such a dramatic version of it. My body’s like, let’s go over the top.

Cheryl (00:44:42):

No, that is so important. Knowing yourself, knowing how you want to know. I definitely like to see a full roadmap at once. I talked to my rheumatologist because it’s like if this and that. There is a chart from the American College of Rheumatology of the general evidence-based guidelines for progressing through medications for rheumatoid arthritis. There’s also one for psoriatic and axial. So you have, if just you start with a conventional dmard, conventional disease modifying anemic drug like methotrexate or sulfasalazine or Plaquenil, if that works, great. If that doesn’t work, you add a biologic or you add another dmard, you add add, then you can do triple therapy or you can then add the biologic depending on how severely you presented all that stuff. And then you try a TNF inhibitor. So I went through that whole progression, but the further you go down it, the less evidence there is because these biologics, lot them have only been out for the last 10 years or 20 years. So we’re getting to the end of the available data. So I be like, I’m racing to the clock, but I’m like, okay, so if Xeljanz is the first JAK inhibitor I been on, so if that doesn’t work, do I try another JAK inhibitor or do I circle back to a TNF inhibitor because I never tried Humira? Yeah, I want to know the roadmap. Other people are like, don’t tell me because it overwhelms me. Yeah.

Stella (00:46:17):

I also just remembered I’m on lum too. I

Cheryl (00:46:20):

Forgot you’re on what

Stella (00:46:23):

I’m, I have my infusion and I’m on lide. I just totally forgot about Lide up until now. Yeah, I’m on that one too.

Cheryl (00:46:31):

It’s so hard to condense your medical history. I truly appreciate. But you sent me some notes beforehand and I was like, that’s a lot of, again, emotional and cognitive labor that goes into sharing your story. So thank you. And I think the other thing that you mentioned me beforehand is knowing your rights as a protected as an American with a disability. Would you want to share a little bit more about that?

Stella (00:46:57):

Yeah, I think there’s a lot of protections in California for disabled individuals, but there’s a document, I can look it up afterwards. I have it in my little pile over here. Basically, I went to my doctor and I said, when I knew I was going to have to do the infusions, because obviously Humira and Broel, all those self injectors you can do at home, I get a little tired on the weekends, but it never took time out of the day doing an infusion, I’d have to take a half day at least. So I got a letter from my doctor that’s supplied by the government that basically says, this person’s disabled. They need this treatment. They also may need physical therapy. You can’t fire them because these are their rights and these are the things they need to do. And fortunately, I feel like my work was like, you really didn’t need to do that. But a lot of works you do. And I think to protect yourself and say, Hey, I’m going to need this time, even if it’s not something as dramatic as an infusion, even if you’re just like, Hey, to get back up to being able to type, I need to go to a PT and OT twice a week, and that’s going to be two or three hours, maybe get that letter. And again, I’ll Google what the exact government name of it is, but just protect yourself.

Cheryl (00:48:17):

So did you have to take, when I was on my paid, I would just use my sick time for those four hours. But did you not have to even use your sick time for that?

Stella (00:48:26):

I use my sick time. I mostly am able to make up time throughout the week. I kind of work nine hours a day and then five hours on Friday or something. I just am able to do it on Fridays, which is really nice. But there’s times where I had a covid scare. The person sitting next to me had covid, so I had to test and delay, and it was midweek sick time. But I also, because I’m immunocompromised, I know I’m going to end up in the ER once a year for something stupid. Someone else is going to get a cold and I’m going to end up with bloody murder, whatever it is. Oh, no. So I kind of like banking my sick time for my severe illness just because

(00:49:14):

It just does happen. And I got my tonsils removed because I was getting staph infections in my tonsils over and over again. And that’s just not a good look. Again, I’ve just had a lot of throat stuff, like the staph infections and my tonsils, the strep throat definitely has been a kicker. And what was crazy is I got a cold recently and it ended up going away in about five days. And my husband ended up hiring to get antibiotics for a severe tonsillitis. So we had the same thing. And finally, it didn’t kick off a flare. I didn’t get severely sick. It was the first time that I had a cough and cold and throat thing, and I didn’t end up in going to see a doctor about it. So that was a serious blessing, and I’m really glad I, that’s exciting. Had that vasectomy.

Cheryl (00:50:08):

That’s huge. And not everyone gets totally as severely sick as often. We are all a little different. I’ve only ever been to the ER once, and it was for something that wasn’t directly related to my ra, it was a very strange, sudden heart palpitations thing that felt like, I just felt like my heart literally leapt out of my chest. It was so scary that I was like, this is not normal. This is just not. So I went in and there, of course, this is just a, you’re fine, but I do get the gunk that goes around and it takes me a little longer, and I go to urgent care more probably than the average person to get those diagnoses of, I got the flu a few years ago before covid, stuff like that. But yeah, knowing you’re rights and each country is different, each state is a little bit different, is super important. Otherwise you’ll end up doing that thing. That same thing you talked about with suffering with, you’re throwing up with sulfasalazine. People end up suffering being, well, I can’t ask for accommodation. And they don’t realize, oh, you can’t, actually,

Stella (00:51:26):

One thing is one more thing. They put me on methotrexate at one point, and that upset my stomach too. And I dealt with that for a while, and then I was like, by the way, it really messes with my digestion. And they were like, oh, there’s an injectable. And I was like, how would I have known there was an injectable? I, it’s

Cheryl (00:51:44):

Totally fine. It’s so funny. Don’t, because it’s so common to have GI upset with the pills. I sometimes wonder, why don’t they just put everyone on an injection? But the problem is so many people don’t like injections. I have a needle phobia that I think that I, that’s my theory. I don’t know why there’s some other reason. But yeah, if you are listening to this and you have a lot of tummy upset with oral methotrexate that the easy fix is to switch for any people that you fix is to switch to the injection. There’s lots of scientific evidence that it’s associated with less GI upset.

Stella (00:52:24):

And I’ve switched rheumatologists so many times and methotrexate, it’s always the first line of defense. And I’ve talked with my parents and they’re like, why do they keep recommending it? And I had to explain to them that 60% of people that have this disease according to arthritis.org, are treating with methotrexate. So the reason they do it is it’s not like the first line of defense. It’s the most successful one.

Cheryl (00:52:48):

Yes, yes. And 50% of those do well with methotrexate monotherapy, which means that’s the only thing they’re taking. So I saw that on a 2019, I’ll put this in the show notes too, in the 2019 Rheumatoid arthritis article by Dr. Jeff Sparks, who’s a really wonderful rheumatologist in Boston. And it’s just like, oh my gosh, 50% are just on methotrexate. And the fact that they’re only on methotrexate implies that that is sufficient because of the things rheumatologists want to do is make sure that you’re not overmedicated because these are immunosuppressive. So yeah, sometimes it can be hard to know those larger statistics and tell you obsess over the condition like I have. But I’m so appreciative of your time, and I want to get to the rapid fire questions now, which is, yeah, you’ve already given so many gems and words of wisdom, but is there anything else that you would want to say to a newly diagnosed patient specifically?

Stella (00:54:01):

Don’t think that the first one is going to work. There’s so many backups and treat yourself with kindness. Things are going to change. I think those are definitely the biggest ones, is advocacy. And yeah, they’ll give you methotrexate. They’ll recommend a bunch of different things, but if that doesn’t work or if it’s only doing 80%, always say something. I feel like there’s always no question the rheumatic community of how well treated am I? Is this treating me enough? Yes,

Cheryl (00:54:42):

It’s

Stella (00:54:43):

Treating my, but I have an allergic reaction at the ejection site. Be vocal about those things because there are always other options. And it shouldn’t be a choice of the degree of pain. The goal should always be no pain. Not that that’s always possible, but I think keep asking questions until you get to that no. Or very little pain. It shouldn’t be shifting the pain to a different pain.

Cheryl (00:55:12):

Yeah, I mean, that’s a conversation that’s super good to have with your provider because yes, for the majority of patients, they’re trying to get you to remission with no symptoms, no objective signs or subjective. But you may be in that 20% of people who have what’s called difficult to treat, ra taking a note as we’re talking post note. And those people may not realistically get to the full remission, but you’re still trying to get to as close to remission and close to no pain as possible. Do you have a favorite arthritis gadget or tool in your toolbox?

Stella (00:55:59):

I feel like I talked about my favorites, which is definitely the Oh, oh my God. No. My favorite is I have ice packs that are knee shaped. Oh, yeah. And those were great because when I was having a real flare, my knees were a hundred something degrees, they were on fire. And so it’s literally an ice pack in the shape, a little knee wrap, knee wrap. I think it’s probably for post surgeries and other stuff like that. And that was golden.

Cheryl (00:56:30):

Amazing. Do you have a favorite book or movie or show you’ve been watching recently?

Stella (00:56:39):

I’ve been totally absorbed with Yellow Jackets. It’s a showtime show, but I haven’t finished it, so I don’t want spoilers. But yeah, I’m really enjoying it. It’s a bunch of girls stuck in. I have a,

Cheryl (00:56:55):

It’s a lot of amazing actresses in that. So what’s the one? Melanie Linsky from New Zealand. She’s just amazing in everything she’s in, so thank you for reminding me. I have a little notes app list of shows to start watching. We just started watching the Diplomat, which is

Stella (00:57:15):

Fun.

Cheryl (00:57:17):

It’s really good. Really. It reminds me of The West Wing, which is one of my favorite shows. Very fast tasted

Stella (00:57:24):

Dialogue. The woman that is the creator of the show used to work on the West Wing, so that’s probably why.

Cheryl (00:57:30):

Oh, I didn’t know that. Do you have a favorite mantra or inspirational saying for when things are hard?

Stella (00:57:41):

Oh my God, I definitely wrote it down to you. And now lemme just pull it up,

Cheryl (00:57:50):

Put it in the right spot. Wait,

Stella (00:57:56):

Where is it?

Cheryl (00:57:58):

Is it, there’s always another option maybe?

Stella (00:58:01):

Yeah, I think it might’ve been, there’s always another option, but I had another one written for myself that I keep on my computer in a little note section whenever I’m stressed. And that one’s really helpful. Oh, this is my favorite of all time, which is just general life for everybody, and it’s cater to other people’s moment of weakness.

Cheryl (00:58:23):

Oh, I’ve never heard that.

Stella (00:58:26):

Yeah. Oh, I love that. And I think it’s really hard to not get caught up in what other people think of you, how they’re projecting their feelings on your body. So yeah, don’t cater to other people’s moments of weakness if they’re mad about your situation, that is not you to bend down to their level.

Cheryl (00:58:50):

I love that. I love that. What’s something that’s bringing you joy right now?

Stella (00:58:58):

So my knees are doing pretty well. So I’m able to do a ceramics class on the wheel again. And that’s something that I’ve just, it’s been a love and passion my whole life, but it’s definitely something that’s a lot harder when I can’t bend my knees. But yeah, I’m entering a lot more art into my life again, which brings me just so much happiness.

Cheryl (00:59:21):

I would never done that, but I want to try. You’re inspiring me. It does seem potentially hard on the fingers, but I wonder if I could, this action where you cup it from the outside is doable, but inside,

Stella (00:59:37):

Yeah, that’s hard.

Cheryl (00:59:38):

Idea is a tool for that. The gadget. Yeah. Last one of the rapid fire. What does it mean to you to thrive with chronic illness’s? A hard one.

Stella (00:59:53):

I think it’s just saying yes to things in life. Saying yes, even when it’s hard going out to the museum or hanging out in a park. And I think thriving with your disease is always looking for something to bring you happiness. Life is going to be a little bit harder. I

Cheryl (01:00:16):

Love that it is congruent with the arthritis foundation’s kind of overall message of live. Yes. When I first came up live, yes. I was like, yes, what does that mean? But then I realized, yeah, they’re saying yes to life. Yes to experiences instead of having to say no, which I love. I resonate with that for sure. And is there anything else you wanted to share with the listeners before we wrap up?

Stella (01:00:47):

Let yourself be in the world. Don’t feel like you need to hide. I feel like the being disabled, you tend to become more of a hermit. You tend to go out less. It’s so easy to not see disabled people because of perception. And I think we need to just be out in the world more, and people see us more. Because ultimately when you interact with a little kid, they do not care. A five-year-old is just going to look at you and think that your rollator is like a hot car. It is the weird perception and judgment of other adults that you’re absorbing. So I think that’s my biggest thing, is knowing that you can belong. Get the handicap accessible chairs in the movie theater. Don’t try and go up a bunch of stairs when you get concert tickets. There is accessible seating, and it’s usually a folding chair where you can stretch your legs out more. Learning about different parks that had benches, that had different seating arrangements. I did so much research and I found so many things I could do. I really felt like, oh my God, I can’t walk my dog. I can’t do this. You start thinking in this, and it was a lot more fun to start exploring things of what you can’t do.

Cheryl (01:02:14):

I love that. That’s a beautiful point to end. Where can people find you on social media if they want to connect? Is that public for you? I just realized I should have asked that before.

Stella (01:02:27):

Private. I’m a little weirdo.

Cheryl (01:02:31):

No. Oh, no, then nevermind. She’s a mysterious lady of the night and you can’t find her. Haha. She only exists on the podcast. That’s okay. That’s okay. Sorry, I usually ask that beforehand, but, so this is so great. Thank you. I know that there’s so many people that are going to relate to this episode, so I super appreciate it and thanks again and bye-bye for now.

Stella (01:03:04):

Thanks, Cheryl.