fbpx
one woman with gray hair and glasses and one woman with brown hair and glasses smiling on a purple background
Podcast

Finding Music Again with RA and Sjogrens: Alice’s Story

4 days ago
40 min read
Add comment
FacebookXRedditPinterestEmail

Listen Now:

Watch Now:

Summary:

When Alice was diagnosed with rheumatoid arthritis, she feared it might take away the things she loved most—especially music. In this episode of The Arthritis Life Podcast, she and Cheryl discuss how she’s adapted over the years, finding ways to stay connected to joy, even when faced with physical challenges.

From singing to trying nine different medications in five years, to embracing the THRIVE framework from Cheryl’s Rheum to Thrive Program, Alice shares the ups and downs of life with rheumatoid arthritis. Ultimately, Alice reminds us that living fully with RA doesn’t mean giving up on what matters—it means finding new ways to engage, and finding a way to balance grief for what you’ve lost with gratitude for what you still have.

If you’re newly diagnosed, her story is a powerful reminder of the importance of connecting with what matters and striving to thrive, even if the path looks different than you expected.

Episode at a glance:

  • Adjusting to Life with RA: Alice shares her journey of adapting to a rheumatoid arthritis diagnosis and how it has impacted her daily life and passions.
  • Coping with medication ups and downs: Alice shares the emotional roller coaster of trying nine different medications in five years in search of one that would put her RA into a lasting remission.
  • Music & Resilience: How Alice found creative ways to stay connected to music, including learning Gaelic to sing a special song.
  • The THRIVE Framework: Practical strategies Alice uses to maintain joy and purpose despite physical challenges.
  • Redefining Limitations: Encouraging insights on shifting perspectives and embracing new ways to engage with what you love.
  • Message of Hope: Alice’s advice for newly diagnosed individuals: you can still live a full, meaningful life—it just may look different than expected.

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:

Alice Getchell

My name is Alice and my primary health condition is seronegative rheumatoid arthritis. I have a long list of other conditions, some of which are related to RA and some not. I have no professional expertise in this. I am however a retired clinical laboratory scientist, which makes me just dangerous enough when asking questions while speaking with my doctor. I hope I have something to offer as a patient.

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:

[00:00:00] Cheryl:
All right. I’m so excited today to have Alice Getchell on the Arthritis Life podcast. Welcome, Alice! 

[00:00:07] Alice:
Thank you. Glad to be here. 

[00:00:09] Cheryl:
Yeah. I’m glad to have you. And can you let the audience know, just as a quick introduction, where do you live and what is your relationship to arthritis? 

[00:00:18] Alice:
Yeah. I live in Minneapolis, in the suburbs. I have seronegative rheumatoid arthritis and Sjögren’s. I have, several other conditions. I think we all do. 

[00:00:37] Cheryl:
Yeah. They say autoimmune conditions don’t like to travel alone. So, they like to bring little friends, like Sjögren’s and other things. And I think, you know, one of the most interesting parts of people’s story often is just how they got diagnosed. ‘Cause it can be a really simple process or it can be a very complicated one. So, can you let the listeners know a little bit, how did you get diagnosed with rheumatoid arthritis? What were some of your first symptoms, and what was that process like? 

[00:01:11] Alice:
Okay. Well, I was diagnosed in September — not September, December of 2020. So, it’s been four years, a little over. It was like, initially, it was a shock because I had been to another, well, my primary care, I guess it was, had tested me a couple of times in the previous years. Because I was questioning things about what my hands were doing, what they looked like, how they functioned. And my primary care tested me at least twice and said, no, you don’t have it. The markers aren’t there. Well, lo and behold, my eye doctor finally suggested, I think you should see a rheumatologist. So, I did. 

At Mayo Clinic, they diagnosed me by first X-rays and then suspicious from that, they did an MRI and confirmed, in that rheumatologist’s opinion, which I totally agree with now, rheumatoid arthritis. My eye doctor had also suggested Sjögren’s. She agreed with that. The thing is about that initial visit, she elaborated on things I didn’t want to know, like what some of the complications or conditions that could develop over time, which was like lung problems, and then she mentioned lymphoma. Well, that just set my husband off. He was with me and that was, it was not a happy scene. So, I don’t know. I guess that’s all I can think of right now. 

[00:03:02] Cheryl:
Oh, no. I mean, that’s a really, it’s very common to feel like scared and overwhelmed, like on the one hand it sounds like you were suspecting that it’s rheumatoid arthritis and you’re, unfortunately it is a common story that primary care doctors sometimes think that rheumatoid arthritis is exclusively diagnosed with blood work, which it’s not. It’s considered a diagnosis of exclusion, meaning they take multiple factors into account, primarily your personal medical history, your subjective report of your symptoms, like, not just, “Oh, do your hands hurt or not?” 

What’s the pattern in rheumatoid arthritis? It’s usually worse in the morning, stiffer in the morning, better with activity throughout the day. And then, they look at, then they do look at blood work and imaging. And then, they — what’s the fourth one — family history, personal history. And, oh, and their physical exam. They physically touch your joints, and the skilled, the person most skilled to do that is the rheumatologist, not the primary care doc. Anyway, I mean, of course the doc, primary care doc’s job is to, try to funnel you to the right specialist. But long story short, I can imagine it was a mixed emotion, because on the one hand you’re like, I think they’re — I think I do have something, but then they’re saying I don’t. And then, you finally get to the rheumatologist and they say you do. So.

[00:04:23] Alice:
Yeah. I was shocked because I had, I don’t know, I just — having that confirmation shocked me and of course it was distressing, but yeah. 

[00:04:36] Cheryl:
Yeah, understandably. And it’s so hard. Like, we have this in, the Rheum to THRIVE alumni group that we’re part of, and we’re going to talk about that more later, but we have this common saying of, like, ignorance is — knowledge is power, but ignorance is bliss, you know? So, on the one hand, it’s like, the doctor has to explain to you that there are some serious possible complications, but it definitely can be shocking. And honestly, I don’t remember having that conversation because in my head, I only remember the validation of the diagnosis because my story was different than I had been very, I felt very medically like gas lit. So, your example in mind just goes to show that no two diagnoses conversations are ever the same, right? So, I’m glad you had your husband with you though. And so, you got this diagnosis. What are some, what’s been your treatment journey? It’s kind of hard to summarize, I know. But, and first of all, I have to say I’m sorry you got diagnosed during the early days of the pandemic. That just must have been really, really rough. So, like what treatments have you tried, and what’s gone well and not well from that? 

[00:05:56] Alice:
Right. Well, initially, methotrexate. Initially pills, but then they really wanted me to get on injections right away. So, made that transition. So, I’ve been on those all four years. Then as methotrexate didn’t seem to be doing all that much, we started with the biologics. And, to shorten it, I’ve been through eight different ones. There aren’t any of them that I felt really did help at all. I did get to one, Xeljanz, which I did get relief from for about 10, 11 months, and then it seemed to just either quipped or tapered off, not helping anymore. Tried infusions of Rituximab, and I felt worse on that. I really did. And then, of course, because it’s six months before you can get a next infusion, that was too long to me to wait and see my rheumatologist. When I finally did, she agreed with me that let’s try something. So, we’re going back on Xeljanz because that gave me the most relief that I’d ever had. And being off from it for a period of time, we thought maybe it would now be like starting it brand new and that it would help. But I’ve come to realize, and in talking in our support group, that it’s going to be a journey of probably trying new drugs. And they’re going to possibly wane away, try something new. And it may be like that for the whole rest of the time that I’m here. So. 

[00:08:04] Cheryl:
Yeah. Yeah, and it’s hard to predict too, because I actually was looking at some of the research and I was really surprised to learn that 50% of people with rheumatoid arthritis are actually able to have well controlled disease on methotrexate alone. So, there’s a lot of people out there who are actually doing well on just one medication, but in the support groups and the people who are seeking more support tend to reflect the more either severely affected population or people who are experiencing some of the kind of what they call ‘treatment resistant rheumatoid arthritis’ or ‘difficult to treat rheumatoid arthritis’, and it’s just hard at the beginning of your journey to know which camp you’re going to fall into. So, certainly I think you’re unfortunately on the end of the spectrum of difficult to treat RA and I think that’s why we still need so much funding for more research and better treatments for RA. Because there’s about, depending on the study you look at, about 5% to 20% of people with rheumatoid arthritis don’t experience that huge leap of relief on the current medicines. 

So, like, what helped you cope during that time? It’s so hard to get your hopes up for each new medicine and then dashed. It’s a, for me, at least it’s sometimes been, I’m lucky because each medicine I’ve been on has worked for at least a few years before it starts working on, unlike yours sounds like it was much quicker. Because I’m on my fifth medicine in 22 years. So, you’ve already been on eight in five years. Again, not to play suffering Olympics. I’m just saying you’ve experienced the roller coaster of hope more than I have. So, what helped you cope, has helped you cope with all that? 

[00:09:46] Alice:
Ah, well, I’d have to say, well, primarily finding your Rheum to THRIVE program. That initially just — I couldn’t, I can’t stress enough how important that was to me because it really validated me, as you’d said earlier, and finding out, realizing I’m not alone. There are other people out there who understand because so many times maybe family members or friends just don’t get it. I won’t tell any stories about that, but there were some. Well, I did, also, I did a lot of reading and researching RA because that’s what I do. I want information. But I had to force myself to take it in small doses because it’s easy to get overwhelmed with everything you read. So, I don’t know, I guess those are the things that helped me the most. I, in the beginning, the first thing that really helped was finding a great rheumatologist. What was difficult was trying to just slog through all these medications, trying to find the right one and finding out, learning that RA is lifelong. I have great admiration — I don’t know if I can think of enough adjectives, but for those of you who have lived with us for majority of your life. I have to say I’m grateful that I wasn’t diagnosed until later in my life. At the same time, there were years when I didn’t understand what was going on. So, yeah. I guess that’s it. 

[00:11:45] Cheryl:
Yeah. Yeah. No, I think you’ve touched on a lot of the really important tools like in my coping toolbox too, which are, one, like finding a good partnership with a rheumatologist. I think that’s, like, that’s very key, especially if your case is more complex and you’re needing to make lots of decisions about meds and stuff like that. And then, finding valid sources of information, you know, you said you did a lot of reading. I know people have different levels of like medical literacy and just general literacy. And unfortunately, there’s so much misinformation out there about all autoimmune conditions. So, being able to find that is key. And then, having support, social support, whether that’s in the form of in-person relationships, online communities like we have with our Rheum to THRIVE community. Those are three huge, huge emotional coping tools. And so, I’m glad. How did you find the group? I always like to know how people found the program because I want to make sure I’m getting the word out.

[00:12:50] Alice:
Yeah, well, I also have to say that I found and I don’t know how I found this person but a, quote unquote, ‘RA coach’. I don’t know if that’s even the right word, but I wasn’t totally happy with the whole process with that person. I have to say, I think, I probably was just in searching online saw your program and a little overview that is there. And I thought this might be it, and it totally was it. So, it’s been my main source. Yeah. 

[00:13:33] Cheryl:
That’s so, no, I feel really — I often think about how I initially envisioned making this program, I started thinking of it in 2019 and I was imagining it being in-person in Seattle, where I live. And it was only because of the pandemic that I did it online. And I’m so grateful that, you know, I mean, I’m not grateful for the pandemic obviously, but given that it had to happen. I’m glad that it led me to doing it online because then I’m able to reach people and help people like you and not just me helping you but also people around the globe through the program can connect to each other. We have people in South Africa, someone in Japan, someone in India. It’s hard with the time differences sometimes around the US and England and everywhere else, who’ve been able to — we have this, even though we might live in different places, maybe have different religions or different ages, we all connect on this one crucial thing, which is that having inflammatory arthritis. Did anything surprise you when you joined the group, just out of curiosity, like the support group part or the other people in the group or —? 

[00:14:48] Alice:
Well, I don’t know. I’m not sure that I was surprised, but happy because I could see the age ranges. I was glad to see other people in my age group. But throughout, and people that had it much longer. Because everyone had such personal experiences that were helpful to hear what worked for other people. All kinds of tips and just hearing other people’s stories which helped make a connection to the people in the group just beyond hearing someone talk. It’s just, it feels so personal, even though it’s online, it feels so personal and I’m happy to be there.

[00:15:35] Cheryl:
Yeah. No, and I, another dimension I would just add to that is that I think it’s also therapeutic as a member of the group to lend that support to others, right? To get — you’re an active member. You’re not only receiving support when you share your story, but you’re in a position where you get to communicate support to the other members and that can feel — and I think having people in different age ranges in particular I really like because maybe it’s, maybe this is a stereotype or something, but people who’ve lived longer often have wisdom that young people don’t, right?

[00:16:13] Alice:
True. I’ll agree to that. 

[00:16:17] Cheryl:
Yeah. Like we have people in their twenties, like somebody who’s just completing college and like looking into, what career should I do? And like someone like you, who’s lived a little longer can give, you know, lend support and on that. And then, on the vice versa, maybe those of us who are a little older, I feel like maybe we’re a little fatigued sometimes, and the younger people, even though they have inflammatory arthritis, sometimes they have a little more energy or pep or something, and so we all can support each other. And it’s been — one thing I didn’t anticipate when I started it is how many people would bond and share information over their secondary diagnoses or their comorbidities. 

So, we’ve ended up talking about Sjögren’s a lot more than I expected, only because so many people in the group have Sjögren’s as well as rheumatoid arthritis or psoriatic arthritis. And I have to say, if you had asked me in 2019 what Sjögren’s was, I would have just thought what the average healthcare worker thinks, which is that it’s just dry eyes and maybe dry mouth. I didn’t know it was systemic autoimmune condition, just like rheumatoid arthritis, and it affects all the membranes, moisture producing membranes in your body, all your GI tract, everything. I’m, like, I’m telling you guys if you don’t know, but just listen to people and people listening. There’s also that bonding or there’s people in the group who’ve had shared experiences either with like cancer or with endocrinology or issues with thyroid. There’s just so many ways we can connect. So, I’m glad that you’re a part of the group. And the other thing I wanted to ask you about, we always talk a little bit before the recording about what you as the interviewee would like to share about. And you said you wanted to share about what it was like navigating RA while trying to maintain my desire to persevere and adapt to what was a changing landscape. First of all, that’s very poetic. And can you tell me a little more, what you mean by that and what that was like? 

[00:18:19] Alice:
Yeah. Well, I’ll try. It was important to me — it’s always been true for myself of how I approach things. I want to learn as much as I can and I want to stick with it; learning. I want to know more, continue to learn, continue to adapt and find new ways of doing things that I can’t do anymore. And it’s always hard to let go of things that you can’t do anymore. Because maybe to your point of living longer, that there were many things in my life that were very important to me, and I couldn’t do anymore, can’t possibly, and accepting that was just very difficult. But learning to adapt, learning what I had to absolutely let go of, that was part of the process. That was part of the process. So, initially it was scary and I wasn’t really happy with the diagnosis, of course, but it’s been actually a wonderful learning experience. That’s an odd way to put it, but there’s so much in our lives that can change and we don’t know what comes next. So, I don’t know if that fully answers the question, but I, just wasn’t one to give up, I guess.

[00:19:57] Cheryl:
I love, I really love that word ‘perseverance’ and the other word, ‘adapting’. And can you, if you can think, I hate to put you on the spot, but can you share any examples of an activity or something that you had to adapt or vice versa, one that you had to let go of maybe?

[00:20:17] Alice:
Well, primary one is I’m an amateur musician and I have a lot of instruments that I’ve played over the years, had to let go of almost all of them are six or seven. I can still play my instrument that is the closest to me in my heart which is the autoharp. And anyone that doesn’t know what that is, it’s sort like a zither if anyone’s ever seen those, but it’s a different thing. But at any rate, I’m still playing that I play as much as I am able. On pain days, of course not. But I am trying to revive my piano playing, which is I’ve been playing my whole life ever since I was five. So, that was pretty important to me. And it’s been very hard to let go of that. I’m still struggling with letting go, but again, like you said, adapting. You just find new ways of doing things that surprise you, actually, that I didn’t know I could think of a way to change this or do this differently. So, that applies to, you know, things every day around the home, like an electric can opener when I can’t do the hand crank anymore but it’s very cool because it’s runs on batteries you just set it on top of the can, and it does the whole work and then you turn it off and the can opens. It’s, to me, miraculous.

[00:22:03] Cheryl:
Yeah.Yeah!

[00:22:04] Alice:
The technology that we didn’t have before. And what’s the other thing? There’s something else. Well, if I think of it, I’ll let you know. 

[00:22:16] Cheryl:
Yeah, no, I’m sure. I love that point about how you just become, you become so much more well versed in adaptation and over time, it’s like you think of creative solutions that you didn’t even you wouldn’t even have thought of before. And in a way like you’re just on autopilot, like before you get diagnosed with a chronic illness, you just go about your life and the way you always have right and then when you get that diagnosis, you have to reevaluate — and this is me being occupational therapist and a patient — you have to creatively think through, okay, like just yesterday I was having a hard time opening the gas cap on my car in Washington state where I am. You do it yourself. I have an aid for it, like a little gadget. But I happen to be driving not my regular, the car, my car’s in the shop. So, I had a different one. And I was like, okay, like I don’t have a gadget with me. I don’t have anything I could turn into a gadget. So, instead of pinching with like my thumb and my pointer finger, I was like, can I use both hands and use like the palm of my hand to do it?

 And so, it’s like that creativity, you know, I don’t know. I think before I would have been like, okay, well, I guess I just can’t do it, right. I’d have to ask someone for help. Which is totally fine to ask for help. There’s no problem with that. But sorry, what’s more important is talking about music. ‘Cause I think it is the things that are close to your heart that have to do with your identity and that are so — there’s so something so primal about music. I remember learning in OT school that how, there are times people can have strokes in certain parts of the brain where they can still sing, but they can’t speak, right? Like, regular sentences or vice versa. There’s some, it’s some, a different part of our brain that we don’t, that we use specifically for music, right. 

[00:24:06] Alice:
Yeah. 

[00:24:07] Cheryl:
So, and it’s not one that these instruments — like, a lot of things we can adapt, right? There are things you can adapt. I saw this other day, an OT occupational therapist posted a cool adaptation for a guitar for somebody who has low hand strength and mobility. But for the, there are other things that are harder to adapt, like a piano, or like a hitting a drum with your hands, like stuff like that. So, do you think it was just like time that allowed you to let go of some of these things? Or not let go, but maybe put them on pause for now until there’s like a miracle cure? 

[00:24:52] Alice:
Yeah, I’d say that’s true. Time, trying to be patient, which is difficult. I don’t know that I’m always a patient person. It depends on the situation and what’s going on. But I would love to hear from you at some point about the adaptation for guitar, because I really miss that. Yeah. I haven’t come up with anything. I’ve tried different things, but I haven’t found anything that satisfies me, so.

[00:25:22] Cheryl:
Yes, I will. I’ve saved it. It was on Instagram, of course. Thank you, social media. Someone sent it to me. They were like, did you know about this gadget? I was like, no, this is crazy. And I know you also sing, right? 

[00:25:36] Alice:
Right. 

[00:25:37] Cheryl:
Has that been affected by your Sjögrens or RA, or no? 

[00:25:41] Alice:
Well, initially, I didn’t know that you have joints in your larynx.

[00:25:47] Cheryl:
Yeah. 

[00:25:48] Alice:
And when I was having what I thought was some kind of strange symptom that I opened my mouth to sing and suddenly nothing came out. And I panicked. And I don’t even remember how I dealt with it at the time. I just know it startled, it scared me. It scared me because if that’s, the primary instrument of humankind, the first instrument had to be singing. I — but at any rate, I did see an ENT and he did the scope and looked at my vocal cords and he said, just stick with what you’re doing for your RA treatment and then he did send me to a voice coach who gave me some exercises to do. And eventually I just kind of persevered and kept going. And I don’t really feel much in the way of effects on that now. So, I’m grateful for that. Very grateful. 

[00:26:53] Cheryl:
That’s really good. 

[00:26:55] Alice:
Yeah. Also, I was just wanting to add that, singing and playing instruments has been a joy for me my whole life. And my husband and I do music together. We have a couple of friends that we do music together with. And it brings me such joy. It’s a big — I don’t even want to call it a coping thing — with art, but it is. It’s so uplifting. I have a little logo on one of my bags that I carry to, carry my music in, and it says ‘Music is what feelings sound like’.

[00:27:33] Cheryl:
That’s your thing on your, when you turn your camera off, that shows up. Yeah. Yeah. 

[00:27:39] Alice:
I didn’t know if I — I might need to change that, but at any rate, it’s so true. It’s just so true because sometimes what you can’t express in words, you can express in instrumental music or even vocal. Like you were talking about, the difference between speaking and singing. You can express emotion in music, feelings, just a lot of things with that. So, if anyone is musical at all, at least listen to music, you know?

[00:28:13] Cheryl:
And yeah, that’s where the adapting comes in. So, on the one hand, adapting can mean I’m going to find a new way to do the same activity. So, let’s say the activity is piano. I’m going to find — and what I love about piano is that, is the sound, the intrinsic joy of just the music. And I’m going to adapt, I’m going to maybe find a piano that has keys that are like closer together like maybe a keyboard versus a big grand piano or things that don’t require as much range of motion; that’s one adaptation. Another one is to say like I’m, my limitations are such that I cannot physically play this piano right now. Let’s say an example of somebody who’s paralyzed, completely paralyzed. They could still find adaptation because they could maybe do some way of, like, eye tracking technology that maybe allows you to, quote unquote, ‘press’ the keys, but you’re not going to be able to do it the same way and connect the same way that your brain is used to. Like, you have these neural pathways of I’m playing the piano; I’m moving my fingers. 

And then, there’s also — sorry, I’m rambling, but in the course, I did want to point out that we have this THRIVE framework, each letter of THRIVE stands for a different element that we go over in the self-paced course and in the support group. And the V stands for values and valued activities. And that has been one of the most really fun ones to talk about and really deep ones to talk about in the groups, right? Because we talk about there’s ways of changing the activity and adapting if it’s, let’s say, music. But there’s also, if you can’t do it the way that’s pleasurable to you anymore and you can’t, none of the adaptations have worked, then what I recommend is looking at what is it about that activity that I value? Is it just the joy of music? Is it the social connection when you’re doing it in a group? You know, really breaking it down and then seeing if there’s an alternative activity that you could choose or a way of modifying it so that you’re like, say, composing music versus playing music. Two really two different skills, but maybe you could discover that you actually really love that. 

Or in my case, it’d be swing dancing. Sometimes my body wouldn’t allow me to partner dance, which is one of my favorite parts about it is the dancing part, but I also can go to a swing dance and enjoy the social part. I could also talk to the DJ. I could do — I could DJ a set. I could do so many, you know what I’m saying? I know you know what I’m saying, because you’ve lived through this. So, I think there’s a stage where people get stubborn and that stubbornness can be a really good quality where you’re like, no, I’m just going to wait till I can find the right thing that’s going to allow me to do everything I used to do my old life. I’m going to get my old life back. Then, there’s a stage where you’re like, okay, actually now I’m going to have a new kind of stubbornness to say, I’m not going to let this disease stop me from enjoying this thing, even if I can’t do it the same way, right. Does that resonate? Sorry. That was like a million thoughts.

[00:31:18] Alice:
No, absolutely. Absolutely true. Absolutely true. 

[00:31:21] Cheryl:
Yeah. I love that you do it with your husband too. Sorry. I actually forgot that you do it with your husband. That’s really cute. 

[00:31:29] Alice:
It is. And it’s a whole different thing. I mean, I do a lot of stuff on my own without him, but when we do it together, there’s that, you have a special relationship with that person you’re closest to, so that there’s that. But then, when you add a couple of more people, that is another dynamic. Or even more people, that’s all a total different dynamic. And I still sing in the choir at church and there’s all different aspects. I’m going to throw in one more thing. I didn’t realize this before and I’ve read about it since. I’ve always loved languages. I took French in high school and college and loved it. And, but I found the Duolingo app. 

[00:32:21] Cheryl:
I’m on it too! 

[00:32:22] Alice:
Yeah. Well, the thing is I’m learning Gaelic and it’s very difficult and it stems from wanting to learn to sing in Gaelic, a certain Gaelic song. And so, that’s just propelled me into something else. So, now I’m not only studying Gaelic, but I’m refreshing my French, and I’m doing math and I’m doing, what’s the other thing? Well, I’m doing music too, but that’s just dabbling in something that reinforces it. But what I didn’t know was the connection in the brain that between music and languages, the spot in your brain that processes both of those, however that is, work together. And so, that was, yeah, that was encouraging to me to, well, Hey, there’s a lot of ways I can keep my brain active and avoid the aging downfalls of losing memory and so on. So, yeah, that’s been really fun. 

[00:33:32] Cheryl:
I’m writing down that. I’m going to look that up and maybe put some links in the show notes for people who might want to read more about that connection of music and language. That reminded me that, yeah, not only are there people, I do know that like after a stroke, which we can learn a lot about how the brain works by looking at people post-stroke because the strokes are sometimes very localized. So, if you suddenly can’t do a specific thing and your stroke was in that certain area, then you know that’s what that area does, right? So, although the brain is complicated, it’s not just like one tiny little real estate is in charge of whatever. But I know that there’s people who they can either they can speak after a stroke, but they can’t sing, like I was saying earlier. Or they can sing and not — it also goes with expressing yourself in writing. Sometimes they can write, but they can’t speak or sing. Or they can sing and write, but not speak. It’s just really fascinating how all that works. So, you’re right that it’s not just the singing. The singing is musical and there’s something to having when you’re expressing yourself in both that tonal, whatever you call it, for music and linguistically. Yeah, it’s really fascinating. I actually would love to be like in another life, like I would love to be like a neuropsychologist, and that would be so cool. But anyway, okay, back to the, back to my little linear questions here, or my attempt to be linear. I think it’s actually time to go to the rapid-fire questions. So, do you have any best words of wisdom for people who might be newly diagnosed with an autoimmune form of arthritis, like rheumatoid arthritis? 

[00:35:13] Alice:
Yeah. Well, I saw your question written down and I thought about it. Words of wisdom for someone newly diagnosed: Find a good rheumatologist. You may have to search, but I lucked out. I think going to Mayo Clinic helped me find someone right away. Researching as much as you’re able, but don’t overdo it too much too fast because it can overwhelm you. You’re going to have good days and bad days. That’s — you can’t escape that. That’s what’s going to happen. And be kind to yourself. Don’t be hard on yourself. Don’t, you know — just look for the things that either you’re good at or you enjoy and magnify those somehow. Let’s try it. Again, try not to get discouraged. And come to Rheum to THRIVe. 

[00:36:16] Cheryl:
Oh, yeah. I did not pay her to say that. [Laughs] 

[00:36:20] Alice:
Not at all. Yeah. 

[00:36:22] Cheryl:
Thank you. That’s so sweet. Yeah. It is a really special, it is a really special group. There’s an alumni group that continues meeting, like, weekly year round, which has become really a special community. Do you have a favorite quote or inspirational saying for tough days? 

[00:36:44] Alice:
Yes, I do. I have several, actually. One is inscribed on this necklace that I wear all the time, all the time. Never take it off. It says, ‘Never, never, never give up’. That is good for me. And when sometimes you play with your jewelry and I do, I’m reminded, okay, what this says. And my husband gave it to me years ago. I cherish it. The other, my very favorite quote I have is ‘You can do this hard thing’. 

[00:37:21] Cheryl:
Yeah. Yeah. 

[00:37:22] Alice:
It’s a title of a song by my favorite singer/songwriter. And she’s such a, she’s a great writer. She has a wonderful philosophy and outlook on life and it shows up in all of her music. I just, I’m —

[00:37:38] Cheryl:
Who is it? 

[00:37:40] Alice: 
Carrie Newcomer. She’s mostly a folk type musician, but she travels over the country. She travels around the world, actually. She leads workshops, and they’re geared toward meditation and how to be present with music and have it just fill your life and help you feel good inside. So, anyway, that and yeah, she’s just wonderful. 

[00:38:18] Cheryl:
I love it. I remember you showing that in the group as well, which is, and then we listened to it and it was like, oh, it’s really powerful. On another note, do you have a favorite arthritis gadget or tool in your toolbox? And I say here, physical or metaphorical, ’cause sometimes it’s not like a physical gadget, but.

[00:38:38] Alice:
Yeah. Yeah. Well, I mentioned the — 

[00:38:40] Cheryl:
Can opener?

[00:38:42] Alice:
Can opener.

[00:38:42] Cheryl:
The Kitchen Mama one-touch hands free can opener. Yeah. 

[00:38:45] Alice:
Absolutely. And I get excited when I get to use it. It’s funny. But I have to say, I have a non-physical tool in my toolbox, if you want to call it that. And that’s practicing gratitude every day. I try to find something every day, as many as surface when I look at something or I think about something. Practicing gratitude has given me a major tool. I just, looking for something in even in the difficult stuff, looking for something to be either if not grateful for but looking some for something I can learn from. Maybe there’s something in what has been a bad day that I can use later. I learned how to cope with that and use that later.

[00:39:36] Cheryl:
I love it. I love it. It’s been a great one for me as well. I know we were both on the Finch app, a self-care app. That’s really fun. And you can connect with friends there and stay accountable to your goals and I always thought, oh, I practice gratitude all the time, I don’t need to like formally do it, like I just, in my head, I’m like, I’m grateful for this, I’m grateful for that. At dinner, at night, we do like to say one thing we’re thankful for each day in my family, that started with my parents when I was younger, and we do it with Charlie, my son, too. But it’s been really good for me, it’s actually writing it down, like taking the time in the Finch app each night, I write it down. And that’s actually been surprisingly impactful for me. So, just in case you’re listening, you’re like, I’m grateful, I don’t need to write it down. Try writing it down and see what happens, maybe. 

[00:40:24] Alice:
Yeah. That’s true. 

[00:40:25] Cheryl:
Little piece of fly by advice. Do you have a favorite book or movie or show you’ve watched or read recently?

[00:40:34] Alice:
Actually, yes. In fact, it’s a series on Netflix and we’re watching it for the second time because the third season has just come out. And so, it’s called ‘After Life’. Ricky Gervais wrote and stars in it. His ‘colorful’, I’ll call it a quote, with language might bother some people. And there’s parts of it can be depressing. And sometimes even gross. There’s sometimes I have to do this with it. But the thing about it that strikes me so much is it’s poignant in dealing with a really difficult life situation. And so, you watch him go through all these phases of acceptance, but he’s so negative through the whole experience and he gets to a point finally that he’s starting to get it. And it’s been really fun. I’ll probably watch it a third time. 

[00:41:47] Cheryl:
That’s awesome. I love it when a show is rewatchable. That’s like the best. I like Ricky Gervais. Yeah, he can be a little crude, but he’s got a really unique point of view. Do you — okay, this is the last one, but it’s a big one. What does it mean to you to live a good life and thrive with rheumatic disease? 

[00:42:13] Alice:
Yeah. Well, I have to say, music. That’s just at the top of the list. It’s just part of my being. Well, just trying to thrive. I don’t know, just putting forth the effort every day. Sometimes it’s hard to get out of bed. But I say when I wake up, okay, it’s a new day. What’s going to be — what’s going to present itself today that I either can enjoy or may have to just slog through?And so, I do that and force myself to get up and get out of bed, even though it’s painful because it’s always there when I wake up. And exercising to keep moving. Just keep moving. I’ve read that, I’ve heard it from so many people, that even when it feels uncomfortable or difficult, just walk as far or as long as you can; 10, 15 minutes. And especially outside in nature, in all the seasons that you’re capable of doing because everything is out there that feeds you feeds your soul. I don’t know. I guess it’s hard to think of it in that way. 

[00:43:41] Cheryl:
No, that’s great. I think being able to, what I hear through that is a) being, fighting to still be able to do what you love, like in your case, music. And then, refusing to give up and say, I’m going to get up each day, even when it hurts. And I’m going to do the best I can. I think that’s a really beautiful thing for people to aspire to. So, thank you for sharing. Thank you so much. It’s always a lot of effort to share your story. So, I appreciate that you went down memory lane and helped share about your diagnosis and your experience with the support groups and everything. Is there anything else you would like to share with the audience before we wrap up? 

[00:44:27] Alice:
Well, I’ll just say that I found out I love to travel. When I was working there wasn’t that much opportunity because I wasn’t one to take vacations like you should when you’re working. But traveling since I retired, we’ve just been on lots of — we’ve been on river cruises and ocean cruises and they’re so fulfilling to experience another culture and scenery, places you’ve never been and never thought that you never would ever see in your life. 

[00:44:57] Cheryl:
Right. Right. 

[00:44:59] Alice:
Yeah, I, that’s the only other thing I’d throw in. 

[00:45:03] Cheryl:
To just, yeah, pursue what you love and yeah, don’t, maybe don’t put it off if you’re interested in it. Yeah. I love that. I’m sorry. You’re on the same psychic wavelength as me because I just I’ve never done a cruise, like a real cruise. And, or I’ve never done a river cruise. I’ve done like one cruise before for a friend’s bachelor party, like, 15 years ago. But I was just looking at river cruises. I was like, this is so cool. ‘Cause I get a little claustrophobic out on the open seas. I like get like that weird fear of just, I feel like I’m unmoored, argh, where am I? I want to be grounded on the land. But a river cruise, at least you can see the land on either side, right? So, yeah. 

[00:45:44] Alice:
Yeah. And then, there’s more, I think there’s more stops along the way. 

[00:45:48] Cheryl:
Yes. 

[00:45:49] Alice:
Towns and cities, smaller villages that you’re not going to maybe encounter on a big cruise and talk to the people that live there, the natives, and just strike up conversations mostly in English. I embarrassed myself once in France. I’ve been practicing, “Do you speak English?” that was my, gonna be my primary thing because if I can’t, if I panic and can’t think of what I want to say in French. Anyway, so what do I do? I ask him in French, “Do you speak French?” And I’m like, okay. Okay. Then I was, so embarrassed because he just goes, “Oui.” [Laughs] Oh, what did I do that for? But anyway. 

[00:46:38] Cheryl:
That’s so cute. That’s so cute. Oh, man. Oh, that’s better than mispronouncing or better than putting the wrong word in there and like accidentally saying, like, “I hate France,” or something. 

[00:46:49] Alice:
Yeah, exactly. Or, “Do you know where my foot is?” I don’t know.  

[00:46:55] Cheryl:
Yeah, yeah. Totally, totally. Well, thank you so much again for coming on and taking the time. I know, I usually ask where people are on social media, but I know you’re not really. If you want to share any of your handles, you can, but you don’t have to. It’s totally up to you.

[00:47:11] Alice:
I am on Facebook. I don’t use it a lot, but I can be found there. 

[00:47:18] Cheryl:
Okay. Perfect. Awesome. Well, thank you so much again. And I’ll see you in the Rheum to THRIVE group later this week, but we’ll say goodbye for now. 

[00:47:29] Alice:
Okay. Thank you so much for this opportunity. I’m very happy and excited to do this.

[00:47:35] Cheryl:
Thank you. I’m so glad you were able to do it. So, we’ll talk to you later! 

[00:47:40] Alice:
Okay.

Add comment

Your email address will not be published. Required fields are marked *