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Patient Stories, Podcast

Computer Programming, Medical Retirement and the Power of Art: Lessons from Wendy Hawkins

September 30, 2022
54 min read
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Summary:

On Episode 80 of the Arthritis Life Podcast, Wendy Hawkins shares what it was like to grow up in the 1970s and 1980s with juvenile rheumatoid arthritis, before the current effective treatments were available.  

Wendy reflects on the power of art, specifically mandalas in helping her cope and bringing her joy while living with pain.  She also reflects on her career as a computer programmer and her experience with disability and medical retirement. Wendy and Cheryl discuss the ups and downs of running support groups for people with rheumatic diseases, and Wendy shares her best advice for newly diagnosed patients.

Video of Interview

Episode at a Glance:

  • Wendy’s diagnosis story of juvenile rheumatoid arthritis as a baby
  • Growing up in the 1970s and 1980s with JRA: Wendy shares her ups and downs, from acceptance in grade school to isolation in high school and young adulthood (when she first met someone with her same condition at age 26)
  • Treatments: Reflections on how treatments have changed in the current era as compared to the 1980s
  • Career choices with JRA: Wendy’s shares how she managed a career as a computer programmer at Hewlett Packard after initially hoping to become an artist.
  • Disability and medical retirement: Wendy wants to keep working longer but her job is not conducive to her medical needs; she has a smooth process of going on social security disability but experiences a very tedious and dehumanizing experience while attempting to utilize her long term disability insurance benefits through her company. 
  • Importance of Art and Mandalas in Wendy’s coping:  “Art was the one place I could be free.” Wendy takes a healing art class with a focus on mandalas and shares how “it’s about getting quiet with yourself” 
  • Support groups: Wendy gets involved with the Arthritis foundation support groups and then is asked Kim Burda to help admin Co-Admin of the 26,000 person “Rheumatoid Disease (RD) – Laughing, Living, Loving, and Learning” for people with various forms of Rheumatoid Disease. SHe shares the ups and downs of being an admin.
  • Wendy’s best advice newly diagnosed patients? Find a good rheum who will partner with you and share and answer questions. Don’t be afraid of the meds.

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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Speaker Bios:

Wendy Hawkins: I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at the young age of 18 months old. I’ve only known a life with this disease. the JRA has been my constant companion, relentless opponent, convenient scapegoat, annoying menace, and profound teacher throughout my life and career.  When I was young my one wish was to be rid of the JRA.  Today, I see how this lifelong journey has made me stronger, more compassionate, and deeply grateful for the little things that most people take for granted. Rheumatoid Disease (RD) – Laughing, Living, Loving, and Learning

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:  

Okay, I am so excited today to have Wendy Hawkins, who is someone I’ve only ever talked to over social media before. So, now it’s fun to talk in real time. How are you, Wendy?

Wendy: 

I’m doing great. It’s a beautiful day here.

Cheryl:  

Oh, awesome. And yeah, can you just give the audience a quick introduction to yourself like where do you live, and what is your relationship to arthritis?

Wendy: 

I currently live in Mesa, Arizona, and I was diagnosed with juvenile rheumatoid arthritis when I was just a baby. I lived in Pittsburgh at the time. And so, my parents were concerned. At six months old, I started having all of these different symptoms like I didn’t want to eat, I cried all the time. And I started to crawl funny around that age where you start crawling, and I would favor, you know, one arm or hand over the other for crawling. I would crawl on an elbow on one side, and also favored a knee. So, they took me to a doctor, and I don’t know, I was diagnosed — misdiagnosed, I should say — with something called housemaid’s knee. And I don’t know what that is, and I don’t know how a baby could have it. But they thought that I had it and they put my legs in casts, which is the worst thing that you can do for somebody with JRA. But this was in the late 60’s, and they didn’t know much about it back then. And so, eventually, my parents got directed toward a pediatric rheumatologist at a children’s hospital in Pittsburgh. And he took one look at me and he knew, or he suspected, that it was juvenile rheumatoid arthritis, and did the blood work. And it all came back positive for that. So, at that point, there really was no medications for kids. I mean, I was only a year and a half old by that point. So, they, you know, basically told my parents, “All you can do, really, is just put her on lots of aspirin. Start her on baby aspirin until she’s old enough to have lots of regular adult aspirin.” And that was it. And then the other thing he said was, “And if you can, she’ll do better if you could live in the desert southwest,” which is what brought my family eventually to Phoenix, Arizona.

Cheryl:  

Wow. That’s amazing that they had that dedication to bring you out there.

Wendy: 

Yeah, I think they didn’t enjoy the winters. 

Cheryl:

Yeah. 

Wendy:

And I think they were definitely open to, you know, charting new territory. And we first had to go to Baltimore, and we lived there for a little while. And then, we had to move to California, to San Francisco. And that’s where I went to kindergarten. After that, at the end of my kindergarten year, the transfer to Phoenix finally came through and from first grade on, I lived in Arizona until I graduated from college. Then I moved back to California, the Bay Area and found a job.

Cheryl:  

I love the Bay Area. Yeah, yeah. And, you know, you were saying, you know, you — this was back in the 60’s, kind of 60’s and 70’s. In terms of like your throughout school, I’m assuming, what were some of the kind of highlights and lowlights of being — this is like, your life story, I’m sure. But, you know, being a young person growing up with this condition. 

Wendy: 

Right. Yeah. Well, you know, the thing is, so I feel really lucky. The grade school that I went to here in Phoenix, the kids accepted me. They, you know, they, they did not make fun of me or pick on me or anything like that. I mean, I hear the horror stories today. And I feel like man, I was so blessed because these kids were all so supportive. And at that point, you know, like when I was going to early elementary school, I couldn’t walk the distance from our house to the school. So, my mom would pull me in a waggon, then my sister would walk, you know. And then, at school, if I had to go to the music building or the art building, which was farther away from where the classrooms were, or even the cafeteria, my classmates would fight over who got to pull me in the waggon. They all wanted to pull me. So, they were very supportive. And I just, I loved it. And I felt like I had a really good time, although I had this disease and I couldn’t really do PE. That was the other thing back in those days. It was very different. They said, “You need to rest, you need to not do all this physical activity.” And so, I never got to do PE with my classmates, and I would go and do art. And that’s how I got involved in loving art, or I’d go work in the library and help out the librarian when PE was happening. And the only time I got to do PE is if it was a rainy day, and we all had to do something indoors. And then, I got to participate.

Cheryl:  

Yeah. No, it is, it’s really fascinating how like, I mean, you could see, in general, it seems a little bit intuitive. If you’re — if you have a lot of pain in your joints, exercise doesn’t seem like the best thing to do at face value, you know. But now all this research shows that the stiffness just gets worse if you’re immobile. 

Wendy:

Right. 

Cheryl:

So, yeah, but you didn’t have a chance to even experience that because everyone was telling you not to, you know. 

Wendy: 

Yeah, it was a totally different — everything has flipped now for what they tell children who have JRA. And I would say that that’s a big benefit. You gotta, you gotta move. You know, motion is lotion, I always say, because it keeps your joints moving. And, of course, if you’re in a flare, or if you have something really serious going on, you have to temper the movement, but you should still try to move as much as you can in the other joints, you know. It really helps.

Cheryl:  

Yeah. Yeah, and one of the things I hear a lot from the children with JIA, even today, juvenile — they’re calling it idiopathic arthritis now, not juvenile rheumatoid arthritis — but is that they had to miss school due to fatigue or flare ups, or, you know, getting sick due to their immune systems being a little out of whack. Did you experience like periods where you had to miss school or were you able to keep going?

Wendy: 

I didn’t have any long periods of having to miss school, not that I can remember. I always felt like, everybody got sick, but I didn’t because my immune system was so overactive and there was nothing, there was nothing tamping it down. So, my brother and sister would get sick all the time. And they both got chickenpox. And I was sitting right next to my sister in the backseat of our car right before she broke out in chickenpox the next day. So, I was like right next to her during her most contagious time, and I never got it. So, I thankfully didn’t get sick a lot. But sometimes, you know, the arthritis would keep me home. I think it happened more in high school. I struggled more in high school once the hormonal stuff started kicking in. Then I had a harder time. And the fatigue, I remember, being really bad. And I got bronchitis a lot when I was in high school. But as an elementary school student, I did quite well and didn’t miss a lot of school. I loved school. I was a bookworm, and all that nerdy stuff.

Cheryl:  

Yeah, I did too. Oh, that’s — I just, I love that you had such a supportive community. Because it is kind of possible. I think so often, we hear these, you know, sob stories, and those are legitimate. I mean, I’ve had them on the podcast. And that’s, you know, there’s not to say that, you know, each — everyone’s story is valid, but I’m sure it’s relieving for some people to hear. And that’s what my story was really positive, too. In my 20’s I got diagnosed, but people will be, “Oh, was it — did people like, peer pressure you to drink and do all these things, or like not respect that your body needed to rest at times?” And I’m like, no, no, my friends are like, really supportive. They were actually — they had seen me get really sick and not know why. And then, get diagnosed. And they saw me rapidly get better. So, I was diagnosed in 2003 and immediately put on methotrexate and Enbrel. So, I was like, fast-tracked into medicated remission. And so, they’re like, this is — this diagnosis is working for her. Like, it’s helping. You know, the treatment’s working for her. So, anyway, but yeah, so you said in high school, you struggled more. There is this interesting hormonal connection with inflammatory arthritis. So, at that point, were you struggling with mobility at all? Or were you able to get — like, how did you get around? I’m guessing that you didn’t have friends to like — or you didn’t have —  did you have a waggon?

Wendy: 

No. No, no. I definitely was able to walk more by that point. Okay. You know, I — what I remember most about high school is I felt more and more socially isolated and shy. I became more and more shy and insecure. It was definitely the hardest period of my life. I think, high school is what I categorised as the roughest point because I was surrounded by so many more new people, not just the the nice close-knit group that I had from elementary school. And I really couldn’t compete in keeping up and doing all the sports or cheerleading or all those other things that, you know, typical high schoolers do. And I did get around pretty well. I mean, I had to ask for a top locker because I couldn’t really bend down. There were a little accommodations that I had to ask for. I know we had stairs to go to upstairs classes, but I think I remember that I had an elevator pass. So, I was one of the few people that got to use the elevator. Well, there were little things like that that I did. But I just remember more and more feeling insecure and socially isolated. And I mean, I did not ever meet a person my own age that had this disease until I was 26. So, from my whole childhood, I felt like I was the only one. And I mean, I know now I’m not, clearly. 

Cheryl:

Right, right. 

Wendy:

But it was a very hard feeling, because I did have a few very close friends. But most of the kids didn’t understand, you know. Yeah, it was harder in high school.

Cheryl:  

And I imagine it’s like, they’re kind of — the world is like opening up to them in so many ways. And then, maybe your world starts feeling a little bit more limited. And that’s hard, that’s really hard. On top of just the insecurity everyone feels as a teenager, you know.

Wendy: 

And yeah, and my body was changing. I was getting deformities in my knees, my fingers, my toes, my jaw. I just, because I was unmedicated until I was 17, honestly. I was only on aspirin until I was 17 years old. And so, I remember my fingers would curl up, especially this is my claw hand. And they would curl up at night when I slept. And I remember taping barrettes to them at night to try to keep them from curling. Because I wanted to try to stop it but I really couldn’t stop it. And my family didn’t know anything about the Arthritis Foundation. This was — high school was during the 80’s, the early 80’s.

Cheryl:  

Oh, okay. Okay. I was trying to do the math. I’m like, wait, so yeah.

Wendy: 

So, I was in high school from ’81 to ’85. But it was, so we just didn’t know. We didn’t have the resources. And we didn’t know that these other things were available out there. And so, that led to, you know, having a lot of damage because of those times and being untreated.

Cheryl:  

Well, and there just weren’t as many — there were hardly any treatments or there was like gold shots. Like, what was the first treatment you did at 17?

Wendy: 

Well, at 17, I went into a really, really, really bad flare and my father finally took me to — he found an adult rheumatologist who was willing to take me on. And he I remember he put me on Decadron first, which is a, like a little more powerful steroid and oral gold. And I think sulfasalazine, if I’m remembering correctly. Now at that point, biologics did not exist. And at that point, they had methotrexate, but they started you — again, it’s different. They started you at the least aggressive medications, and then, over time, would only move you up to the more aggressive, which I think methotrexate at that time was considered the most aggressive. And so, it wasn’t until I started working after college that they put me on methotrexate. So, now, it’s different. Now, it’s better to start with the most aggressive and like your experience, get you into a medical trans — or medication remission, right, and try to slow down the progression. Whereas back in my time, that was totally opposite. They let you slow roll right into so much damage.

Cheryl:  

Yeah. Yeah. It’s hard. Like, it’s like, know better, do better, right? 

Wendy:

Right.

Cheryl:

They just didn’t know, and it’s, yeah, yeah. Oh, my gosh. I’m glad you’re still able to get it under control enough to go to college. Did it, did that, your condition, kind of affect, I’m assuming like, what you were thinking about your career? Like, why did you choose your career?

Wendy: 

Yeah, so that was a big factor. Honestly, I loved art from the time I was a child, and I wanted to be an artist. That was like, always my dream. But I came to the realization in high school that ‘starving artist’ is a phrase for a reason. It’s hard to make — it’s hard to make money as an artist and it’s hard to get medical benefits. 

Cheryl:

Yes. 

Wendy:

And I knew that I needed to work for a big company that could provide good medical benefits for me. And it was right around that time in the 80’s that computers were starting to come into more everyday life. And so, my father, he was on the hardware side of fixing computers. And he said, you know, “You need to use your brains more than you’re going to have the brawn for the type of job that you’re going to do.” So, you know, he started to teach me basic programing. And I took classes in high school for programing. And I realized that I liked it. I mean, I have this real artistic side, but I also have a very analytical brain side of me that loves the challenge of a program, doing programs. And yeah, so that’s how I ended up getting into programing and software development.

Cheryl:  

That is so neat. And I think I remember learning something, I’m gonna — I’m probably gonna butcher this, but that like, like music and like many arts are kind of like math, fundamentally. Like, so there’s like a logic. I wonder if that, yeah, that seems like it makes sense to say.

Wendy:

Yes. Yes.

Cheryl:

And I know my husband’s an electrical engineer, but I know, for him, he really likes being able to see what he’s created, like to make something that’s somewhat tangible. I think with art, that’s one of the benefits of art, right, is that you’re like, “I made this.” 

Wendy:

Right. 

Cheryl:

I guess, the same with a computer program. But so, where did you end up? Were you working at like a large software place, or —?

Wendy: 

Yeah, actually, while I was — I got my degree from Arizona State University. And I was, you know, researching different companies. And I learned a lot about Hewlett Packard. And I felt like, oh, they’re my dream company, I made that, like, my target goal was to work for Hewlett Packard. And I loved that they had such a great culture, corporate culture of teamwork, and integrity. And I love the inventor story, like, you know, Bill and Dave, Hewlett and Packard, and how they came to create their company, and the way they treated their employees. So, that was my goal. And I got lucky, and I got to work for them for my whole career.

Cheryl:  

That’s amazing. Did you do it, have any like, special tools? This is the occupational therapist in me. But did you have any special like ergonomic tools that helped you at the computer?

Wendy: 

Oh, you know, I definitely had to have my computer desk set out the right height for me. And I needed to make sure everything was at the right height. And that like, when they were giving us laptops to carry in and travel with, that they gave me the lightest one. I had to have you know, special mouse and wrist — wrist, rest wrist — I don’t know what they’re called.

Cheryl:  

Wrist rester. I actually — I’m blanking right now. Wrist pad.

Wendy: 

Yeah, I had to have that kind of thing. And they were really good at flexible, letting me work from home, once we got, you know, the technology was there more to help us work from home. And so, yeah, they were really great to work with me if I needed anything. And when I needed to take medical leave to go have a joint replaced or have some sort of surgery and be gone for months for the recovery, you know, they were really, really fabulous in working with me on that.

Cheryl:  

Wow, that’s great, because that’s a huge question a lot of young people have have asked me, you know, what are some like, quote-unquote ‘arthritis-friendly’ careers, you know, and I’m like, I usually do say something like, you know, if you can make sure it’s flexible, that’s like one of the keys, right? Because you just don’t know how if you’re going to flare up. So, but that’s pretty cutting edge at the time that they were so good about flexible work schedule and remote work, because I mean, it’s 2022. And there’s still companies who are like, “We don’t want you to be remote,” you know?

Wendy: 

I know. Well, you know, what’s interesting is that it happened more as you got toward the late 90’s, as globalization was taking over. Because then, it turned out that you really weren’t working with the people that you sat with in a building. Because I would be on big projects, with people and programmers from all over the world. So, we were all in different time zones, all having to call in to these meetings. We were all on the phone, basically. We’re all on conference calls. No longer would you go into a conference room in the building with the people that you sat near. So, it made it more doable. If you had to be on a call with Singapore at 6am, you know, then you need to have that access at home and you need to be able to do those things from home. Or if you need had to be on late at night with a, you know, another country like Germany or something, then, you know, all of that got factored into. Basically, it felt like we had to be on the computer all the time, there was no more nine-to-five, there was no set lunchtime, no set dinner time, because everybody was on different time zones. And so, it became like, we were supposed to be on like the Internet and work all the time, which eventually led to me not being able to continue working, because it was, it was too much. It took every ounce of my energy.

Cheryl:  

Yeah, yeah. Like, I’d like to hear if you want to share more, like how did that evolve? And was it hard to make that decision?

Wendy: 

Very, very hard. It was. I loved what I did. I loved the career that I was in. And I was in like, what I consider my perfect job, you know. I was the IT tech lead on these big global supply chain projects. So, I would be the lead tech person that has all the different programmers working under me, but really interfacing with the business side and helping make sure everything, that we understood all of their requirements, and then translated into all the code. And then, I loved testing. And my programmers didn’t always appreciate me trying to break their code. That was always the fun part, is I’m gonna break it. This is what testing is. We have to prove that it works. And in order to prove that it works, you have to throw all these different hard cases at it to try and break it. 

Cheryl:

Right, right. 

Wendy:

And so, I loved it, I loved my job. But I did not love having to work so many hours. And I did not love not having the freedom — or the energy, I should say — to eat healthier, and exercise, and all the things that would have given me more balance in my life. I just felt like every, every little ounce of my energy was zapped after my work day, and it just got to the point where I was really, really unhealthy. And I got an infection that my body couldn’t clear. And I got really nervous. And I thought, you know, this is going to kill me if I don’t slow down, if I don’t make a decision to think about my life in a different way. And the question of stopping work is always hard, I think, because we attribute who we are to what we do, right? And once you take away that job, like this job and this career that I had worked so hard for, it’s difficult. Because then, you’re like, okay, who am I after that? 

Cheryl:

Right, right.

Wendy:

And when you go to a party or you go meet new people, the first thing they say is what do you do. And people talk about their jobs. And so, what do you say when you don’t have that cushion of a job anymore? And so, it is. It’s really hard. And financially, I wanted to work longer to save more money into my retirement, you know. I knew in my mind that I probably would not be working until I was 67 years old, right. I just, I knew that that really wasn’t realistic. So, internally, I had set a goal of working until I was 45. Like, if I can make it to 45, you know, then I feel like I could — I could feel more secure. But at 35, I really started struggling.

Cheryl:  

Yeah. Yeah. It’s really cutthroat. I mean, and it’s not an easy job to do part-time, you know? 

Wendy: 

No, no. And because you’re responsible for systems. I mean, if it goes down in the middle of night, you’re up and you’re working on it, when most people are sleeping, right, so it’s not an easy career.

Cheryl:  

Yeah. Like, on the one hand, I’m like, oh, that sounded so good. There was so accommodating, and you could do it remote. And then, you’re like, wait a minute, actually, if you look at all the details, that wasn’t so good. So, yeah, so, I think you, the phrase you used was ‘medical retirement’. Is that right? 

Wendy:

Yes. 

Cheryl:

Okay. Okay. Is that an official thing? Sorry. I meant to look this up earlier.

Wendy: 

I don’t know. I think I don’t know if that’s — I mean, I think some people call it different things as euphemisms to make it sound better.

Cheryl:  

Yeah, yeah.

Wendy: 

But, you know, I mean, I’m on disability, let’s be honest. And a lot of people have a lot of baggage around the word ‘disability’, right? And I don’t necessarily like that baggage.

Cheryl:  

Yeah, yeah. Yeah, it was, I know a lot of people have questions. about the process of going on disability. I know that we could probably talk and potentially rant about this for a long time. But do you mind sharing, was it a difficult process to quote-unquote, like ‘successfully’ go on disability? Or was it smooth?

Wendy: 

I had a very smooth experience. I cannot say that mine is the norm. I got approved right away. I mean, my files are feet thick.

Cheryl:  

Well, yeah. It’s a testament to what you’ve been through.

Wendy: 

Yeah. I mean, actuarially, the way they look at it in insurance and in these kinds of things, you know, someone who’s had JRA since the late 60’s most likely has a lot of damage due to the fact that there were no medications back then. And they were, the treatments weren’t, you know, what they are now about keeping your body moving and all that. So, actuarially, you know, they said, “Oh, yeah, she’s, she’s disabled.” And I, I mean, I did fill out all the paperwork. It was actually easier and smoother and quicker for me to get on social security disability than it was to go through the process at my company for their long-term disability program. And I always recommend people who are working in corporations or any work that offers disability insurance, be sure to take it because you never know, even if you don’t have a disability, because you cannot live a loan on Social Security disability or Social Security retirement, it’s just not enough. And so, I always paid into the program, and I paid up for the higher percentage payment, monthly payment, if I did happen to go on disability, because I knew most likely for me that was going to happen. It was going to be before I was 65 that I’d have to stop working. So, it took two years to go through their process. And I had to fill out a lot more paperwork and a lot more doctors. My doctors had to fill out forms and paperwork. And it was more grueling than Social Security. Social Security, you know, I was approved within three months; it happened really fast.

Cheryl:  

Wow. Well, and that’s, I mean, I used to do new employee orientation. So, I used to be the facilitator at University of Washington Medical Centre for employees. And that, so I got to hear the spiel every two weeks, over and over, for two years. And the the man who spoke about benefits and insurance was, he made a really compelling argument week after week, or, you know, every two weeks about, you know, you give an example of like a 21-year-old whose dad had made him sign up for the long-term disability and he got in an accident and the whole rest of his life, he was able to get those benefits. So, anyway, yeah, that sticks in my head. But in your case, I’m sorry, it is a very dehumanizing experience. I don’t want to put words in your mouth, but to have to prove yourself, you know, over and over again in these appointments and these documents, and I wonder if you got punished for like, functioning — or in a way, felt punished for functioning so well, or pushing yourself. Do you know what I mean? Like, where it’s like, “Oh, well, you could do it. You could do it last year. Why can’t you do it now?”

Wendy: 

Yeah, I actually, you know, I don’t know that I’ve — I can’t say that I felt that. But I still have to go through reviews with HP every — it used to be once a year. And you still had to like, I had to list all of my doctor’s appointments, send them all of my doctors, answer all these questions. And I’m like, okay, I understand. They want to make sure that people aren’t not disabled anymore. But I’m like, if you look at the history of what I have, it’s not — it is a degenerative disease; it doesn’t get better. It’s not like I’m gonna wake up five years from now and be cured. Even if there is a cure I have so much damage and just operating in daily basic grooming activities and normal daily activities is exhausting to me. And I have to use a lot of tools and aids for it. So, I feel like that part is really dehumanizing. And now, it’s every nine months, they switched to a different company that, you know, it’s like, it’s ridiculous. I feel bad for my doctor having to fill out forms every nine months for somebody who’s not getting better and will never get better. And I feel it’s such a waste of their time.

Cheryl:  

How can it be financially worthwhile for them to employ these people to do all this work of reviewing these forms, do you know what I mean? I mean, how many — I guess, they must be catching enough people and not having to pay for disability that it’s worthwhile for them, otherwise, they would just be, it feels like they’re like flushing money down the drain, potentially. If it’s a chronic —

Wendy: 

Yeah, I mean, I think that’s the point. The point is to try to get people to get off of them, off of their having to pay for their disability. And because, you know, they can kick you off just for your doctor not signing the form in time or sending the forms back in time, or, you know, like, it’s just, it’s a racket, and it feels, I feel immense stress every time I have to go through the review, again, because it’s not that anything has changed. And, you know, I get worse and worse each year. But you know, it’s being at their mercy, right, of having to do all this work, every — like, I don’t mind doing the work. I could say, I have time to do the work. I’ll send them every detail about every appointment that I have all year long with every doctor, but I don’t like them bugging my doctor, because she’s busy. She’s got to help patients, and having her have to fill out this same thing. And it’s always the same. Nothing changes in the answers that she’s giving. Nothing changes. It’s all the same. If anything, it gets worse. And it’s just, to me, like such a waste. And sometimes, she doesn’t get it done on time, right? Because she’s got all these other things to do. So, I feel like it’s just, it is stressful. I don’t like it, but it’s the game.

Cheryl:  

I’m so sorry. It really — it really is. There should be, I think, like exceptions for you know, progressive conditions.

Wendy: 

Yeah, I think Social Security has a way that they rate your disability, like, ‘Unlikely to improve’ or ‘Likely to improve’, and I’m in the ‘Unlikely to improve’ category. So, I think I get reviewed maybe every five to seven years or something like that. 

Cheryl:

I see. 

Wendy:

And so, it’s much less frequent. And they already have all my records, right, because they have all of the appointments. So, I don’t have to do a lot of work on that. It’s a pretty easy review. But the corporate disability, you know, it’s a much harder process. 

Cheryl:  

Yeah, I’m so sorry. It’s just, I really — one of my little triggers or anger triggers — like, I mean, there’s many, but one of them is like, unnecessary, you know, unnecessary work. I’m like, I’m always joking to my husband, “I could have written the great American novel in all the time it’s taken to do X-Y-Z,” you know, get the prior authorization, and yeah, it’s just, I resent it, you know, I resent it. And on top of the emotional part, like I mean, in your case, talking about like, you know, feeling like you’re under a microscope every nine months, and you’re just, it’s like they’re making you actually have to confront all these things that are getting worse when, you know — I don’t know, I’m sorry. I’m sorry, you’re dealing with that. But on maybe a more enjoyable to talk about note, I wanted to ask a little more like about your experiences with art, and how as a child, you loved artwork. And now, it sounds like you’ve used certain kinds of art to just to help you with your journey with — do you still refer to it as JRA? 

Wendy:

I do.

Cheryl:

Yeah, yeah. That makes sense. So, you still, but I mean, like, it’s confusing, because it’s like, you’re not a juvenile anymore. But you still get that diagnosis.

Wendy: 

Yes. Yeah, it is still my diagnosis code. If you look at my medical records, it is ‘juvenile rheumatoid arthritis’. That’s been my diagnosis code all the way through, they can change the name all they want. 

Cheryl:

Exactly.

Wendy:

I don’t, I don’t call it that. I don’t. I just refer to it as JRA or juvenile rheumatoid arthritis. So, for me, you know, as I said, the art, my love for art started when I was a kid. It was the one place where I could just be free. And I could do, I could create something nice or beautiful. And, I did art all the way through high school. I also took art history in college, and I loved everything about it. And because I decided not to use that as my career, I just kept it as my special therapy, basically. Like, this is how I express myself. This is what I love doing. And once I got to California, I started — number one, I started volunteering with the Arthritis Foundation and got involved in you know, the Juvenile Arthritis Task Force, where we did lots of different events a year or two, at least two events, a social event and like an educational event for the kids and their families. And then, I also, around that — a short time after that — I got involved with a healing art class. It was taught by — she was 84 at the time, an 84-year-old British woman, who was just like, the essence of unconditional love. She was just amazing, just absolutely amazing. And she started teaching this class about mandalas, and how to use mandalas for healing art. And I started going to her class, and I loved it. I thought, wow, I’d never heard of a mandala before. I knew you could use art for therapy, I’d been doing it for a long time just internally, for myself. And also, you know, doing craft projects with the kids at the JA events. But this was like a whole other thing where it is, it’s about like getting quiet with yourself and meditating. 

So, ‘mandala’, the actual word mandala is a Sanskrit word, which is an ancient language, and it means circle. So, most art that you’ll see that are mandala art is a circle, it’s contained within a circle. And the circle, you know, from like a representative of a symbol, the symbolism of a circle, is wholeness, like the circle of life. The wholeness, everything contained in one. And so, the way my teacher would teach the class is that we would pick a topic for the week, and then we would have a discussion about that topic. And then, she would come up with several different meditation type questions about that topic. And we would sit and we would meditate for a little bit, thinking about whatever question that we chose. We’d draw a circle on our paper, and on the back, we’d write the question, and then we would meditate on it. And it was amazing. When you got quiet, like the images that might come to you, or colors, or symbols. And then, you would paint or draw, or whatever it was that your medium of choice was. And a lot of times you’d get an answer to your question.

Cheryl:  

That is fascinating.

Wendy: 

It’s amazing. So, I always came to believe that when you get quiet with yourself, you’ll be able to tap into some of these under, you know, like peeling back the layer of all your different, maybe your woundings, or your joys, your passions, your sadness, and it starts to come out in the art. And even if you’re not an artist, it’s not really about being an artist and drawing like the perfect heart or anything. It’s about expressing yourself, like just going for it and expressing whatever it is through color, through image, through design, whatever. And sometimes, though, what was fun is that you might not get the answer to the question that you asked, but you’d get the answer that you needed. It would still come through. 

Cheryl: 

I love that.

Wendy:

It was so great. It was such a great healing tool for me, and all of us.

Cheryl:  

So, you would start — okay, so you would start with the question and you would draw a circle, and on the back, you would write the question. But then, you would not draw anymore for a minute or for a few minutes, you would meditate on the question.

Wendy:

Right.

Cheryl:

Okay. And then, you start drawing the images and things that came up. 

Wendy:

That’s right. Yeah.

Cheryl:

Are mandalas — I’m sorry, I’m like totally a mandala newbie. But I’ve seen that — I have, my son has a coloring book thing where it’s like, it’s pre-outlined for you, like a coloring page, basically. But in your case, would you just — is it always like a repeating pattern? Or it can be whatever?

Wendy: 

It can be anything. 

Cheryl:

Okay. Okay. 

Wendy:

I do — I mean [coughs] Excuse me. I’m gonna get a drink.

Cheryl:  

Oh, yeah. Please, please, please do. I’ll pause.

Wendy: 

My voice — 

Cheryl:  

Oh, totally. Any anything you need, go for it.

Wendy: 

Yeah, so a lot of times what you’ll see out there are mandala coloring books. And so, they are pre-drawn designs that are very relaxing to color because you don’t have to think about what to draw, you just kind of color in the different patterns and the designs. But when you’re making mandalas for like healing purposes, you really can just do anything. It can be — it’s not necessarily a design at all. Sometimes, I’ll get flowers in mind, or trees, or fish, or, you know, a house. I mean, anything. Anything goes when you’re making a mandala for healing purposes.

Cheryl:  

That’s so cool. That’s so neat. And I really have noticed like an artistic streak in a lot of people that have autoimmune diseases. 

Wendy:

Oh, yeah.

Cheryl:

Yeah, it’s, I keep thinking, is this like a selection bias or something where I just happen to be encountering people with this? But yeah, and have you, in your experience, do you have a favorite medium? Like watercolor versus colored pencil? What do you like to use?

Wendy: 

I’m definitely watercolor. Ever since I was a kid, watercolors are my favorite. And I think it’s because you can’t hide a mistake.

Cheryl:

That’s why they’re my least favorite!

Wendy:

I know, that’s what everybody says. That’s what everybody says. It is one of the hardest mediums. But it also flows easier. I find it easier on my arthritic hands and shoulders and neck when I’m doing a lot of art, you know, I get really sore. But it flows easier. I mean, you don’t have to work so hard like with oils or acrylics sometimes. But you can’t hide mistakes. You have to accept the mistake. And I’m a recovering perfectionist. So, it is difficult. A lot of times when I finish a painting, I will feel like I only can see the mistakes that I made, and most people will never notice. They don’t see it. But I do. And it’s taught me a lot about having to let go and love the imperfection of it all.

Cheryl:  

I love that. Perfectly Imperfect. That’s my one of my mantras. 

Wendy:

Yes

Cheryl:

And yeah, that’s so great. I was just thinking we should maybe, if you want to share any of your completed mandalas, I could like maybe put them on the episode page or something. I don’t know. Or if you have, do you have a website? 

Wendy:

I do have a website. 

Cheryl:

Oh, okay. Okay. Oh, sorry. You probably already gave it to me. 

Wendy:

Yeah, I gave you the website. It’s called moonlightmandalas.com. 

Cheryl:

Oh, yeah. Yeah. 

Wendy:

It’s my blog site. And so, back in — oh, gosh, shortly after I moved back to Arizona after I stopped working, I finally did create a blog site. And I did a lot more writing about the mandalas. For a couple years now, I have not been active in it. I had a lot of medical issues from 2017 forward. So, I do apologize if anybody goes out there and sees that my latest posting was 2016. 

Cheryl:

We all understand.

Wendy:

There’s a lot of information out there on describing mandalas. You can read through and look at some of my older mandalas that I’ve done and like, what they mean, like how I’ve interpreted what the answer to the question was, and what their meaning was. And then, also, I have some instructions, like step-by-step how to create them. And I think I have, I think I have a list of questions that you can ask yourself.

Cheryl:  

And you have your book, ‘Inner landscapes: A Personal Journey of Healing Through Art’.

Wendy: 

Yes, I do have a self-published book that I wrote about the mandalas after I had started doing mandalas and was talking about them with friends, I kept getting the message that I should write a book about it. And I was very resistant to that because I’m like, I am not a writer. I’m a programmer, and an artist. I don’t know anything about writing a book. But eventually, that message kept getting louder, and louder, and louder until I could not ignore it anymore.

Cheryl:  

I mean, and I think, you know, I tried to tell this to my son because — I’m sorry, I’m just, I’m moving my sit to stand desk to stand mode. I just got a notification, ‘Time to stand’. But I told my son, you know, that I always loved writing. And I think for some people, it’s intimidating. And I just say, it’s just talking. It’s just talking by writing it down. You know, you express, Wendy, you express yourself very well. So, you know, but yeah, I think it’s intimidating because you kind of feel like, who am I to write a book, or a blog, or make a video.

Wendy: 

This was happening as I was still working, you know, that I was getting the messages because I was doing the mandalas throughout my work career. But I feel like it’s actually kind of an interesting story how I came to write it. I was really — I had, once I learned about mandalas and saw how much they helped me and other people in my class, I really wanted to teach it to the kids at the Arthritis Foundation events that we were doing. And so, I approached the Arthritis Foundation about it. And initially they said no, they said no, it’s a little bit too New-Agey, foo-foo, kind of thing. Back then, they weren’t really open to more Eastern type, you know, therapies and such. So, I was disappointed in that. But finally, finally, finally, in, I don’t know, I think it was like 2001 or something like that, maybe it was later. But they came to me. And they said, “Yeah, you know what, we’d really love you to teach that class in our upcoming, you know, education day for the kids.” And I thought, “Oh, my God, I’m so excited. Finally, finally, I get to do this.” And I had gone travelling, I had a vacation shortly before that event was supposed to happen. And I caught a cold on the plane coming back. And I lost my voice. And I was devastated. Like, a week before the class, I lost my voice.

And I’m like, oh, my God, okay, I just have to keep drinking, and doing the steam stuff so that I could get my voice back. I’ve never had my voice gone for so long. It was gone all week. And I had to cancel. I literally had to say, “I’m so sorry. I can’t teach it because I have no voice.” I mean, it was heartbreaking to me, because I’ve waited so long to do it. And I couldn’t understand like, why? Why all of a sudden do I lose my voice? And I’ve never lost it like this before. And it really threw me for a loop. And I couldn’t — I really struggled for months. And then finally one day, I was just sitting, you know, having breakfast, reading a magazine. And I literally heard a voice in my head say to me, “So, are you going to write that book now? You don’t need a voice to share what you need to share.” And I’m not crazy. I didn’t, you know, hear voices normally. But I had been so distraught by it, and couldn’t understand why. Like, what’s the message behind this, right? And it finally just came to me. And that voice told me that I was relying too heavily on having to do it in person. And that I needed to open up my mind and be willing to take the scary risk of starting to write a book. And so, I did. I started that day. I said, I don’t know what I’m doing. But I’m just gonna sit down and write an outline of a book.

Cheryl:  

Yeah. And that’s, that’s what it is. It’s one of the funny things about growing up, I think, has been realizing that, you know, you don’t have to wait for like a permission slip, you know, from the Universe. I think I was a very like, do-good of a child, goody two shoes. So, I’m like, “Okay, I’m waiting for the permission.” And it’s like, no one’s gonna give — yeah, but anyway, I love that that really, really distressing experience led you to the positive experience of making your book. And it is something that can live, you know, for, you know, in 200 years, somebody could be using that book. That’s what’s really cool about it, I think. Hopefully, they’ll implant the book into their brain through technology or something. But yeah, that’s so great. Well, you’ve inspired me, for sure, to make a mandala. And then, the last thing I just wanted to make sure to touch upon before we sadly have to wrap up in a little bit, but is support groups. Because I know you’ve had experience leading some in-person support groups, and you also are the head moderator of ‘Rheumatoid Disease (RD) – Laughing, Living, Loving, and Learning’, which I love the name of that group on Facebook.

Wendy: 

Yeah, I would say I’m not the head moderator. There’s three of us co-moderators.

Cheryl:

Okay, thank you.

Wendy:

So, I want to make sure we’re all even there, because —

Cheryl:  

Sorry. I’m always promoting people. I’m like, “You’re a doctor!” They’re like, “No, I’m not,” I’m like, oh, sorry.

Wendy: 

Yeah. Yeah.

Cheryl:  

Okay, co-moderator.

Wendy: 

Co-moderator. Yeah, co-admin.

Cheryl:  

Oh, that’s the word. Co-lead admin, between a few people. Okay. Yeah. Yeah, okay. Go on. Go on.

Wendy: 

Yeah, it is — it is also, one of my — I came to realize one of my callings in life was to help with support groups. I started — a couple friends and I in San Francisco or in the Bay Area when I lived there. We all met through these JA Taskforce events, and it was such a revelation to me to finally meet people my own age. So, we just started getting together, you know, for like potluck lunches every month or so. And, you know, getting to be closer with friends. And then, eventually, we said, you know, we should actually formalize this into a support group. And I went through the support group training through the Arthritis Foundation, and they, you know, they supported us for a long time. And I ran the group or co-lead the group that’s, you know, in different stages with different other leaders for about 10 years there. And then, I needed to take a break, I was having some health issues. But when I came back to Arizona, I got involved with the local group here that was, it was separate from the Arthritis Foundation. But after being in that group for a few years, when the fellow who ran the group was about to retire, my friend, Samantha, and I decided to co-lead that group. So, we co-led the face-to-face group here for a few years. And then, again, I ran into health issues, and I had to back out of that. But at the same time, toward the end of that, I had been asked by Kim Burda, who had created this rheumatoid disease group on Facebook if I would help her out, because the group was growing and growing and growing, and it was getting to be too much.

Cheryl:  

I think it has like — it has 26,000 people right now? Yeah.

Wendy: 

We have 26,000. When I first started, it was about 5000. And so, she asked Nancy Cade and I to help her out. And so, we help to co-manage the group, and co-admin. And it’s really amazing. I feel like there’s so many people out there who struggle with these diseases. The rheumatoid disease umbrella is very large, you know, there’s so many people that have different forms of it. And it’s hard to get to in-person groups, especially with COVID. There really aren’t very many in-person groups anymore. So, having access to support online is really important. And I think it helps people feel not so alone when this disease can be really isolating.

Cheryl:  

Yeah, a hundred percent. And I know there’s lots of ups and downs with admining a group. I’m curious, like, what are some — because I think people need to give, what’s the word respect, to the admins of these large groups. Because you’ve probably — because I’ve helped a little bit with a different group, just one day a week. But yeah, the amount of spam that people try to put in every single day is hard. But yeah.

Wendy: 

Yeah. You have to constantly work to keep out those things that are harmful for people. And, really, you know, keep the group focused on what we’re really here for. And that’s to help and support each other, share experiences. Vent, you know, sometimes people just need a safe place to vent. And we’re okay with that. You know, like, if you need to come in and, you know, say some swear words, but don’t call people swear words, right?

Cheryl:

Exactly.

Wendy:

If you’re just expressing your frustration, you know, that’s fine. But we expect people to respect each other and respect each other’s choices. Because some people choose not to do the medication route. Some people choose to go the health route. Some people choose to do the full medical route. You know, there’s a lot of different choices that we each have to make every day. And we have to just help and respect each other. And no fighting, you know, none of that. And no spam.

Cheryl:  

No, yeah.

Wendy:

We don’t let you sell supplements.

Cheryl:

Right. Well, yeah. And I’m curious, like, this is like a longer conversation, probably. But is it ever hard for you to see people who are so anti-medication when you got diagnosed before medication was available? Okay.

Wendy: 

Yes, that is really difficult for me, because I want people to understand that the invention of these medications are life-saving and life-changing. And when I look at kids today, who are diagnosed with JIA, or whatever, you know, the specific diagnosis might be, they have so many more options to not end up like me, right. To not end up with the claw hand and so many joint replacements and having to not work, not being able to work your full career. And I feel it’s such a gift. And so, what we learned, you know, this is what time teaches you. If you don’t treat it aggressively from the beginning, then you set yourself up for much harder outcomes. And I don’t want people to end up that way. But you know, all I can do is share my experience and others share their experience, and each person gets to make up their own mind. But it is hard to watch people when you feel like they might be making the wrong decision, but they just don’t know the consequences, that they’re going to suffer.

Cheryl:  

Yeah, yeah. I struggle with that, too. Even though I haven’t lived through what you have, I have lived through this success story that is kind of characteristic of, you know, maybe not the average patient isn’t necessarily going into a sustained complete medicated remission. But at least, I think, 50% of patients now are having achieving quote-unquote, ‘good’ — oh, no, 70%, I saw, 70% patients are having quote-unquote ‘good outcomes’ with current drug therapies. So, I feel like I’m like, Chicken Little, ‘The sky is falling’, but I’m also like, as an occupational therapist, I can’t give you medication advice, obviously. And even if I was a doctor, I couldn’t give like, random people on the internet medical advice anyway. But yeah, you’re right. I think stories, storytelling is primal for all of us, right. And so, they can, you know, they can take conclusions from the stories that they see if people who, you know, and it’s not — and you’ve made so many — you’ve made, you know, a meaningful, thriving life for yourself, but it hasn’t been — I’m gonna, I would imagine, it hasn’t been easy with the pain that you’ve had. Yeah, so.

Wendy:

Yeah, it was difficult. 

Cheryl:

Yeah. Yeah. I don’t want to sugarcoat it, yeah. But, well, thank you so so much. I do always ask people at the end, again, this is like, could be its own entire episode. But is there anything you’d particularly like to share with like newly diagnosed patients? I mean, I guess probably along lines that we were just talking about, or anything else? 

Wendy: 

Yeah. Okay, so I think my main recommendation is to find a really good rheumatologist that will work with you as a partner, that will listen to you, and will share and answer your questions. Because I think it really has to be teamwork. And not everybody finds the right medication right off the bat. Sometimes you have to try a few ones. And it can be, you know, a longer process. But you have to have that, that good doctor to work with you. They’re gold, if you can find a good one. And I feel like that’s where the success starts. And also, I would say, and I know — I don’t know if this is something that people can really understand. But don’t be afraid of the medications. I think there’s a lot of fear out there about the medications, like about different potential long-term side effects or other things, you know. Educate yourself, but don’t not do something because the fear has run amok. 

Cheryl:  

Yeah. A hundred percent. I find it’s interesting that people seem to be incredibly pessimistic about the meds and optimistic about the natural methods. And it’s like, okay, you can’t selectively — you can’t only look at the potential downside of the medicine and only look at the potential upside of a supplement. Like, you have to have the same amount of a, what’s the word, skepticism about both. Ore like, rigorous, you know, look at them both rigorously. And, you know, if you look at the data on the population level, not just individual anecdotes, but the population, you know, thousands and thousands of people, the medications clearly have a strongest evidence base. So, you know, it’s again — yeah, you’re not comparing it to nothing. You’re comparing it to a progressive disease. So, you can’t be, you can’t just be like, “Well, compared to not having this disease.” Like, yeah, well, yes, of course you’d prefer not to have this disease. But yeah, well, I appreciate you saying that. Because again, they’ll say like, “Well, you just think that because you got put on them, and they work for you. But some people they don’t work for them,” and it’s like, but I’m also looking at it, just trying to be really objective, you know, so.

Wendy: 

Right. Yeah, I mean, this disease is progressively degenerative. Left to its own devices, it will destroy your parts of your body; joints, soft tissue, organs. I mean, yeah, that’s what it does.

Cheryl:  

It’s not just arthritis, as we like to say all the time, right?

Wendy: 

Right, right. Yeah. This is not your grandma’s arthritis.

Cheryl:  

Yeah, yeah. Well, thank you so much again, for your time and for sharing. I will put all of your links in the show notes so people can find your book, and the Facebook group, and the mandalas. And I just, I really appreciate you taking the time to talk today. So, thank you so much. 

Wendy: 

Thank you. This was a lot of fun. It was great chatting with you.

Cheryl:  

Thank you. Bye-bye for now.