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Patient Stories, Podcast

The Power of Poetry, Storytelling and Art in Life with RA

8 hours ago
45 min read
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Summary:

In this compelling episode of the Arthritis Life Podcast, host Cheryl Crow welcomes Tori Martinez, a multi-talented artist from rural Colorado who shares her journey navigating life with rheumatoid arthritis and other chronic illnesses. Tori recounts her diagnosis story and the emotional rollercoaster that followed, including her initial relief at a fibromyalgia diagnosis and the subsequent grief when it evolved into rheumatoid arthritis. She emphasizes the importance of redefining healing and self-identity, especially in the context of cultural expectations. 

Tori also highlights the vital role of creative expression, through painting and poetry, in coping with chronic illness and reclaiming parts of her life. Listeners will be inspired by her powerful poems, descriptions of her artistic adaptations, and advice for living a meaningful, purpose-driven life despite chronic health challenges. This episode is particularly resonant for those recently diagnosed with RA and looking for ways to find healing and joy in their new reality.

Episode at a glance:

  • 00:00 Welcome and Introduction
  • 00:20 Tori’s Background and Diagnosis Journey
  • 10:49 Creative Expressions as a Lifeline
  • 13:36 Poetry and Personal Reflections
  • 18:09 Cultural and Familial Challenges
  • 24:40 Redefining Healing and the Hero’s Journey
  • 25:57 The Rollercoaster of Life with RA
  • 27:28 Creativity as a Form of Healing
  • 28:35 Adapting Artistic Practices
  • 32:52 The Power of Letting Emotions Out
  • 33:35 A Poem: Not That Girl
  • 37:59 Words of Wisdom for the Newly Diagnosed
  • 45:33 Conclusion and Where to Find More

Medical disclaimer: 

All content found onArthritis 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:

Victoria Martinez

Hi I’m Victoria Martinez and I live with rheumatoid arthritis, fibromyalgia, and the rarest form of migraine. Creativity is how I make sense of it all. Through writing and art I turn people’s experiences into connection. My background as a social scientist focuses on equity, community voice, and belonging, and those same values inspired me to build my small business, Vida Mestiza.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty 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:

[00:00:05] Cheryl Crow: I am so excited today to have Tori Martinez on the Arthritis Life Podcast. Welcome, Tori. 

[00:00:17] Tori Martinez: Thank you for having me. I’m happy to be here. 

[00:00:20] Cheryl Crow: Yay. So can you first let everyone know where do you live and what is your relationship to arthritis or chronic illness? 

[00:00:27] Tori Martinez: So I live in southern Colorado in the Rocky Mountains.

[00:00:33] Tori Martinez: And so I think I’m about 8,000 feet above sea level. So it’s pretty high altitude over here. And I’m in a very rural part of Colorado and I find that when I tell people I’m in rural Colorado, they think, oh, like someplace like maybe Pueblo or things like that. But we have about 740 is our population.

[00:00:53] Tori Martinez: So it’s a very small, very rural area, but I love it because I’m in the middle of all these mountains and [00:01:00] rivers and I just find healing in nature. 

[00:01:04] Cheryl Crow: That’s beautiful. And so, as just a quick overview, what kind of arthritis or chronic illness do you have? 

[00:01:12] Tori Martinez: So I was diagnosed with rheumatoid arthritis, so that’s my relationship 

[00:01:16] Tori Martinez: with arthritis.

[00:01:17] Cheryl Crow: Okay. Yeah. Yeah. And I’d love to hear a little more about your diagnosis journey. How or when did you get diagnosed? 

[00:01:27] Tori Martinez: I was officially diagnosed in my early thirties, but I had symptoms before that ,and I had, I have two other chronic illnesses that I deal with. And so it’s kind of been an up and down rollercoaster ride for me when it comes to diagnosis stories because I was first diagnosed with fibromyalgia.

[00:01:50] Tori Martinez: I was very young, and so that was, I think, probably an easier diagnosis. And I know some people have a hard time [00:02:00] coming to the place where they actually get diagnosed, but because I was so young and because I was so athletic and very active, that when it hit hard and my doctors knew I was not the same person.

[00:02:15] Tori Martinez: There was something wrong. And so they really did a lot of testing. And of course, like most people, a lot of those tests came back normal. That’s normal. That’s normal. And so they eventually came to that diagnosis of fibromyalgia. So I was being treated for that. And then a few years after that, when I was, maybe in my late thirties, I got diagnosed with rheumatoid arthritis and I had an amazing primary care doctor. So my heart goes out to anybody who’s had so many gaslighting, a different experiences with their doctors. But I have an amazing primary care doctor who was also a family friend.

[00:02:59] Tori Martinez: So [00:03:00] that probably made things a little bit easier for me as well. And he just knew something wasn’t right, and because the test came kept coming back normal, he’s let’s run different tests. Let’s do these different things. And so then it came, I came back RF positive, and so that’s, I got sent to rheumatologist and was diagnosed.

[00:03:20] Cheryl Crow: It’s really wonderful to hear what a compassionate and competent primary care doctor you have ’cause that is, unfortunately, sometimes it is the reason for the delay in diagnosis. ’cause the primary care doctor is like the gatekeeper to rheumatology often. So, and I just found out recently the actual statistic, the latest statistic at least, is that 40% of people with rheumatoid arthritis also have fibromyalgia. So I don’t know which comes first. Typically like the fibro then RA or the RA, then the fibro. But the point being, it can be hard, right? It’s like to a chicken every or to a hammer. Everything’s a nail. I was gonna say to a chicken’s, everything’s a egg.

[00:03:58] Cheryl Crow: That doesn’t make sense. But yeah, to [00:04:00] like, where if you have pain, they’re like, okay, well it’s probably your pain just from your fibro, not from your RA, but you’re, a good clinician will say, well, wait a minute. You’re starting to show these patterns that are more typical of RA, like worse in the morning, and really specific to those like distal joints, like the fingers and toes, right?

[00:04:17] Cheryl Crow: Stuff like that. That’s, whereas fibro tends to be full body kind of aches, like muscle and stuff like that, as well as joint. So, I can see how that would be almost like at first is maybe a little overwhelming or what did you feel like when you got the second diagnosis of RA? Like after the fibro?

[00:04:37] Cheryl Crow: Or were you more like relieved? I don’t know. 

[00:04:40] Tori Martinez: No, no. Yeah. Yeah, so when I got the first diagnosis of fibromyalgia, I thought that was RA. And so when they said it was fibromyalgia, it was relief. I was like, it’s not hooray. Because I saw my dad go through that. My dad has rheumatoid arthritis and I saw the pain that he [00:05:00] lives through and he’s never in his life seen a rheumatologist.

[00:05:05] Tori Martinez: He was diagnosed when he was really young and medicine was different back then for his generation. Doctors were different back then, and so I think the care that I get and the care that my dad get has been very different. 

[00:05:19] Tori Martinez: But so original I was relieved it’s not RA my joints aren’t being damaged.

[00:05:25] Tori Martinez: I’m gonna be okay. So then later on, years later, when I did get the diagnosis of RA, I kind of went to a really sad place. There was that grieving process that I had to go through of this is the life I used to have, and then now I’m gonna have a different life and it’s not gonna be the same and I can’t do the same things.

[00:05:49] Tori Martinez: And kind of grieving that life that I had planned on having and that future I had planned on having and things like that. And so, I went through [00:06:00] that whole grieving process, so it was not easy for me when I got that second diagnosis. 

[00:06:07] Cheryl Crow: Yeah. I’m so sorry to hear that. And I know that many people listening will feel that they can relate a lot to, to that grief.

[00:06:14] Cheryl Crow: And often times, like in the last, 20 to 25 years, one of the things a lot of rheumatologists will do on that initial diagnosis is kind of explain how the treatments that we have today are so much better than the ones in the past. So you like it is so common to, I didn’t have a family member with RA, so I didn’t, I wasn’t that afraid when I got my diagnosis because.

[00:06:39] Cheryl Crow: Anyway, my whole story, I’ve said it like a million times in the podcast, you go back to the archives, but I had been medically gaslit. So then when someone finally believed me and gave me the diagnosis, I just felt very validated and very hopeful because I finally, someone was listening to me. But in your case, it’s I think it’s particularly hard when you’ve seen a blood relative or just someone close to you have it.

[00:06:59] Cheryl Crow: In the older [00:07:00] days before they had the treatments that can control the disease so much better for many, the more people than ever are going into remission. But did your doctor or rheumatologist explain that at all or? 

[00:07:13] Tori Martinez: Explain remission to me. 

[00:07:14] Cheryl Crow: Or explain that like your prognosis is gonna be different than your dad’s because you have access to the better treatments nowadays.

[00:07:22] Cheryl Crow: Or like how did that conversation, the treatment conversation go? 

[00:07:25] Tori Martinez: Yeah, I think I have a really good rheumatologist and she talked about how the things, she asked me what my dad has used over the years and so we talked about that. And then she talked about the different things she wanted me to try.

[00:07:40] Tori Martinez: And methotrexate was one of the things that I got on that eventually did put me into remission for about three or four years. 

[00:07:49] Tori Martinez: And then I’m no longer in remission. And so now I am on biologics and my dad didn’t have access to those things. So [00:08:00] he had a lot of joint damage. He’s had several surgeries over the years and things like that.

[00:08:06] Tori Martinez: And so she explained to me, my rheumatologist explained to me that hopefully these medications will help prevent a lot of the things that my father had to go through. So that was somewhat of a relief. And my dad and I have had several conversations and he is very relieved that they have new medications that I’m being, I’m able to try these different things to prevent some of the damage that he had to experience.

[00:08:33] Cheryl Crow: Yeah. Yeah, that’s, I am, I’m sorry if that was too much TMI asking, but I think I am really fascinated by how those initial conversations go. ’cause they can really set the stage, for the rest of your kind of treatment journey for lack of a better word. And so thank you for reviewing or overviewing yours as well.

[00:08:53] Cheryl Crow: I’m similar to you, I kind of experienced remission for periods of time and then now I’m not in remission anymore, but [00:09:00] in what I call, or many doctors call low disease activity on methotrexate plus the biologic. So that’s basically functional for me. Thankfully. Yeah. Yeah. And one of the other things, is there anything else?

[00:09:11] Cheryl Crow: Sorry, actually, is there anything else you wanted to say about your treatment journey? Like what yeah, anything else you would wanna share from that? 

[00:09:21] Tori Martinez: I would say like the highlight for my treatment journey was finding methotrexate because it worked so well, it helped so much, and I was able to stay working at my job for five more years.

[00:09:35] Cheryl Crow: Oh, wow. 

[00:09:36] Tori Martinez: And so I was really grateful for that. But then like I would say that some of the low lights from my treatment journey have been when things stop working, or even worse when my body starts having negative reactions to things. And then you gotta start all over again and you gotta experiment all over again and figure out something else that hopefully is going to [00:10:00] work and not have all of these negative impacts on you.

[00:10:03] Tori Martinez: And so that trial and error of medications is so awful. 

[00:10:10] Cheryl Crow: Yeah. I’m like, not the, oh yeah, those we’ll see on audio, I’m nodding vigorously. That’s the hardest, like one of the hardest parts for me is that, yeah, those, the uncertainty when you think you might need to change treatments, but you’re not sure yet, you’re like, oh, is this just a temporary flare up?

[00:10:27] Cheryl Crow: Is it just stress? Did I not sleep well enough or is my medication wearing off and I need to switch to a new one? I torture myself sometimes kind of thinking, which one should I, which one is it? You don’t know. You don’t have that crystal ball, how do you, is there anything you do to cope with that experience, like the changing treatments and the stress around that?

[00:10:49] Tori Martinez: I would say that I cope by my creative expressions. That’s probably how I cope with most things in life. And like I explained, when I went [00:11:00] into a depression and it was really hard in the beginning I had that moment where I was lying in bed and I was in so much pain and my brain was foggy, and I was so tired.

[00:11:16] Tori Martinez: I really wanted to get up and I wanted to spend time with my husband, and I knew I needed to see my kids later that day, and all I could do was cry because it was just one of those moments where it’s like you just don’t know what to do. But in that moment, I saw this painting that is behind me in my mind and decided, okay, I can’t get outta bed right now, but I can pick up a paintbrush.

[00:11:46] Tori Martinez: And I can express what I’m feeling in this moment. And so I did that through this painting and so. There is a mountain close to where I live where many people say that it’s in the shape of a [00:12:00] woman. So I was like, I’m gonna paint that mountain. So I painted myself as that mountain lying in bed crying, and the tears are becoming a river because even in our saddest moments, even in our moments of greatest pain, we can learn something from that. We can grow from there. And I wanted to make something beautiful out of that horrible moment in my life. And so that’s where this painting came from. And so painting and poetry are two of the creative expressions that I use to help me cope with my chronic illnesses.

[00:12:40] Cheryl Crow: That’s really beautiful. And I’ve definitely noticed in our community of people with rheumatoid arthritis, there’s many people who are very artistic or who really enjoy artistic expression as well. And so before we started recording, I always ask the guests like, what are you most [00:13:00] passionate about sharing and you mentioned definitely how creativity has become like a lifeline for you as you navigate chronic illness. Can you tell me more about, what are the different mediums you do because you mentioned Okay painting.

[00:13:17] Cheryl Crow: What other ones in poetry? I guess I, I guess, sorry. 

[00:13:22] Tori Martinez: Yeah, so I have written poetry since I was like eight years old. I got my first poem published when I was 11. 

[00:13:30] Cheryl Crow: Oh my gosh. 

[00:13:31] Tori Martinez: And I’ve had several poems published throughout the years in different magazines and things like that. So I thought today that I would share one of the poems that I wrote.

[00:13:41] Tori Martinez: And I think there are times when we all experience gaslighting from physicians. There’s times when like in my case, because I have invisible illnesses I have people tell me all the time, well, at least you don’t look sick. So I think other people who have invisible illnesses [00:14:00] probably hear similar things.

[00:14:01] Tori Martinez: And then there was a day when I was like super frustrated and I came home and it was just like one thing after another where one person had said something and another person said something else. And I came home and I was really frustrated. And that’s where this poem came from. Oh, 

[00:14:15] Cheryl Crow: I love it. 

[00:14:15] Tori Martinez: So hopefully other people can relate.

[00:14:17] Tori Martinez: It’s called World of the Chronic. Welcome to the world of the Chronic. You have now left the safety of being well. This is a realm of pain, tears, and loss of health. Some of us know the name of the path we walk upon. Some of us navigate labyrinth. We don’t yet know what to call. Here you’ll meet Rumpelstiltskin with offers of better days, but ultimately the exchange is more than we can pay. Here you’ll follow the white rabbit in this altered state somehow, always late to the chase and yet yearning for safe space. Some here want a better heart or a different brain, but not even the [00:15:00] powerful Oz can grant wishes in this place. Here, you’ll walk through the doorway to a battle that’s unknown, and yet somehow find the courage to face it on your own. Because even though we’re in this boat together, you’re in your body and I’m in mine, and no one really knows the pain the other holds inside. Here what doesn’t kill us leaves us limping and there’s no metal for surviving here.

[00:15:27] Tori Martinez: We know if people mind what’s happening to us. We don’t really matter to them. This weeds out the fake friends and in the end, we’re only left with the best. In the world of the chronic time does not heal all wounds. Age is not always a factor and we do not always just push through. There is never back to normal and we don’t always get better after rest.

[00:15:49] Tori Martinez: So outsiders looking at our lives, don’t tell us. At least you don’t look sick ’cause it’s just a mask we’re wearing. The real wreckage is beneath [00:16:00] our skin. Sometimes we think positive, but that doesn’t cancel pain. Duality exists for us heavy like the rain trying to exist between the joy and the pain. When our mind is the battlefield, surrender is an option we contemplate.

[00:16:19] Tori Martinez: This season of our life just happened and no reason can soften that weight. They say God gives his biggest battles to his strongest soldiers, but I don’t remember signing up for this fight. I guess now I’m a chronic warrior, but my life is not a cliche. I’m living a real story every single day, and tomorrow may bring more storms, but I’m learning to build shelter in the rain.

[00:16:47] Cheryl Crow: Wow. That’s incredible. I related to a lot of that. How, when did you write that? 

[00:16:54] Tori Martinez: I wrote that one probably sometime late last year. 

[00:16:59] Cheryl Crow: [00:17:00] Wow. I mean, have you shared that one publicly already in any of your books or? 

[00:17:06] Tori Martinez: I shared it in some public readings, but it’s not been published in any of my books yet.

[00:17:12] Tori Martinez: That one is going to be in an upcoming book that will hopefully be released sometime late next year. 

[00:17:20] Cheryl Crow: Wow. Okay, good. Because I think that’s so required reading almost for anyone who loves someone with chronic illness or has someone in their life. Right. Yeah I like the metaphors of the Rumpelstiltskin and wizard of awes and how you wrote them and how there’s no going back.

[00:17:38] Cheryl Crow: I started writing down a couple things that I liked as you were talking, like there’s no going back to normal ’cause that’s, I feel there’s a lot of pressure from other people to say, oh, you’re getting back to normal now. Right? Or you look like you’re, and it’s I do wanna celebrate the small wins I have.

[00:17:54] Cheryl Crow: There are times I’ve been feeling relatively worse and relatively better, but it’s not back to the normal [00:18:00] that I defined as normal before becoming chronically ill. Right?

[00:18:05] Cheryl Crow: Is that similar to you? 

[00:18:07] Tori Martinez: Yeah, absolutely. I think like when I meet people who are newly diagnosed or who are in that limbo of, they’re sick, but they don’t know what they have yet one of the things that I tell them is that you have to define for yourself and change your perspective of what healing means, because I think so many of us think of healing as going back to normal, going back to what we were before we got sick or before we got hurt. And for someone with a chronic illness, there is no going back. I had to change my definition of healing to where healing isn’t going back to who we used to be healing is learning to move forward differently.

[00:18:53] Tori Martinez: And that was a huge thing for me to be able to let go of [00:19:00] what was and those expectations of myself. ’cause I was very much an overachiever. I was very much like a straight A student in school and doing all the things. And I think it’s also a part of my culture because I’m both Hispanic and Native American.

[00:19:18] Tori Martinez: And so very deeply ingrained, I think in our culture is that we need to do more. We need to be there for our family. We need to be strong in all of these different things. And so sometimes that cultural norm doesn’t fit anymore when you’re sick. And that was such a hard struggle for me and for my dad, I think as well because, he was like, he is the man of the family. And so he had those expectations on himself to provide and when work became difficult, [00:20:00] that was such a blow to his identity. And so I think that’s the case for a lot of Hispanic men in our culture, like if they get sick, that is such a huge blow to that identity and a change and who they think they are or should be.

[00:20:15] Tori Martinez: And so for many people who are in either of these cultures kind of managing chronic illness, it can be really difficult to find a new identity and a new way of seeing ourselves. 

[00:20:29] Cheryl Crow: Thank you. Thank you for sharing that. I remember I had a, so I have a friend who has IBD irritable Bowel Disease and she also shared that she’s Indian American, so she shared that in her culture she felt similar. Tina is her name. Similar pressures and then there’s some specific cultural pressures she mentioned. But I’ll link to her discussion. It was kind of talking about overcoming stigmas, about even just being chronically ill in the Indian community, it’s kinda [00:21:00] oh, we don’t talk about that.

[00:21:01] Tori Martinez: And food is so huge in our cultures. Like we have these traditional foods that my Hispanic family eats, and these traditional foods that my Native American family eats, but they all have a gluten And so I had for my health had to go gluten free. And so a lot of those traditional foods I can no longer eat.

[00:21:25] Tori Martinez: And so when I would go to my parents’ house, it was this, my dad refuses to go gluten free, by the way, but they felt offended, like family feels offended if I couldn’t eat something. ’cause they made this with love and they took time to cook this. And so being in the kitchen is the heart of the home for our communities.

[00:21:43] Tori Martinez: And so when something didn’t fit and I couldn’t eat what everybody else was eating, it was embarrassing for me and it was really hard for me to be able to tell them. And so in the beginning, I would just eat it and then go home and pay the price [00:22:00] later for days. 

[00:22:01] Cheryl Crow: Gosh. Wow. 

[00:22:02] Tori Martinez: And so I had to stop doing that because it just became so painful.

[00:22:07] Tori Martinez: And so I had to figure out how to have those hard conversations with my family and let them know I want to come and commune with you all. I want to eat with you all, but here’s how it has to look differently for me because these are the things that I can’t eat. And so sometimes I would take my own things.

[00:22:25] Tori Martinez: And over the years we’ve learned how to make different things with different types of flours so that I could still eat them, still look traditional, and it was gluten-free. And so it’s become a little bit easier, but it was not easy in the beginning. 

[00:22:41] Cheryl Crow: Yeah, I can, I have also demand gluten-free and I, yeah.

[00:22:44] Cheryl Crow: I think there’s added layer that I, yeah. I don’t, haven’t even experienced, like you mentioned of the real, like the kitchen being the heart of the home, and you, it’s like a manifestation of love. Someone’s giving you this food that they’ve made and it’s so hard to say, well, I can’t accept that [00:23:00] because even though I love you and I want to accept that offering because it will hurt me.

[00:23:05] Cheryl Crow: And hopefully I’m really glad to hear that they accommodate you now because a gluten-free dish is just as full of love, I’m sure as a, that’s me saying it logically though, not culturally sensitive. But yeah, and I think I I wanted to also, maybe delve a little more into what you said about this idea of redefining healing.

[00:23:29] Cheryl Crow: I really love that. I have a strange relationship to the word healing because I feel like sometimes people use it synonymously with a cure, which I know is there’s no cure for RA. But the idea of healing, like being made whole, I love that idea. And this

[00:23:44] Cheryl Crow: that’s beautiful. And I had a right when you were talking about how important your story was, the quote from Tony Robbins. It’s so funny ’cause that brought up for me a similar quote that I think relates to all this also from Tony Robbins, who I don’t agree with all of his beliefs, by the way.

[00:23:59] Cheryl Crow: [00:24:00] Not endorsing all of his beliefs. He’s got some things that are like, huh. But I love this one where he said, the quality of your life is a direct reflection of the quality of the questions you are asking yourself. So it’s if the question you’re asking yourself is, how do I get back?

[00:24:15] Cheryl Crow: How do I get back to normal? My old normal, the old me, that your quality of life is gonna suffer versus how do I make meaning and make a good life with the condition that I have right now, which is I have an illness, and does that or does that resonate too? 

[00:24:34] Tori Martinez: Absolutely. 

[00:24:35] Cheryl Crow: Yeah. Sorry. I was like, am I right in thinking of that or is my brain being random?

[00:24:39] Cheryl Crow: Yeah. Yeah. I think that that is beautiful and the fact that you’re helping others redefine their story, redefine healing for them, and take charge almost of your own story. I think I’ve often talked about how I felt in the initial stages of my RA that I was forcing myself to think of my RA in the traditional [00:25:00] hero’s journey where it’s this is a simplified version of the Hero’s journey, but where it’s just one big mountain and like I climbed the mountain of RA, I came back the other side, I’m better now.

[00:25:09] Cheryl Crow: I survived and yay me, whereas I’ve conquered it, and I was forcing myself into that instead of saying, wait a minute. And I’ve also felt like I’ve gotten interviewed also by people who’ve been like, tell me how you conquered your RA. It’s a culturally reinforce this idea that the only way to live well with a illness is to conquer it and be like, it’s not bad anymore.

[00:25:31] Cheryl Crow: Versus I can actually live well and live a beautiful life with bad stuff. Like who doesn’t have anything bad in their life, right? Like with joint pain, right? Whether it’s joint pain or whether it’s mental illness, financial troubles, like everyone has something. So that’s, I try to think of, or I find it helpful to think about that too.

[00:25:49] Cheryl Crow: It’s like not only defining healing as full, perfect disease control, ’cause not everyone can know that. 

[00:25:57] Tori Martinez: Yeah, I think the rollercoaster is a concept [00:26:00] that’s really hard for someone who is healthy to think about life on this rollercoaster because we’ve got good moments and then we’ve got such not good moments.

[00:26:09] Tori Martinez: And then like I’ll have days of clear thinking. And then days of where I’m living in the fog and brain fog has just taken over that day and I can’t think clearly and everything looks very different. But that’s another part of an example of of changing the story around what life is supposed to look like, where we can’t have every moment that’s perfect.

[00:26:34] Tori Martinez: We can’t have every moment that is beautiful and we can’t be strong in every single moment. We all have this rollercoaster of life and we have to allow ourself to feel those emotions. I think not allowing ourselves that full human experience of emotions and processing and time to process those emotions is damaging to us.

[00:26:59] Tori Martinez: It’s [00:27:00] damaging to our mental health. It’s damaging to our physical health. And especially for those who have chronic illness, like if we’re bottling stuff up and keeping all of that inside, that is energy that affects the rest of our body and our health and wellbeing. Stress can kill a person and so we really have to learn how to allow ourselves the full human experience and to process those emotions. I led a workshop a couple months ago with some other writers, and one of the questions that they asked me was, is your process different if you’re gonna paint something versus if you’re going to write about something? And my answer to that question was, no, it’s not different.

[00:27:44] Tori Martinez: My process is the same. It’s the outcome or the end product that is different. So I’m gonna process my emotions the same way, but at the end it, it may look like a poem one day and on another [00:28:00] day it may be a painting. So that’s what my life looks like and so.

[00:28:06] Cheryl Crow: That’s really cool. I love that. So it’s like the message is the core message, and the core expression is what’s important, not the form it takes. Right? Yeah that’s absolutely beautiful and something else you had said before we started recording is you said creativity isn’t just an outlet for me, it’s a way of reconnecting with myself and reclaiming parts of my life that chronic illness tried to take away.

[00:28:30] Cheryl Crow: Can you expand on that a little bit or share what that means? Yeah. 

[00:28:35] Tori Martinez: Being an artist chronic illness touches your body in different ways than it would for someone who’s not typically doing that type of creative form. Because holding a paintbrush one day is not the same as holding a paintbrush another day when your RA is flaring up and you’re dropping everything, or you just [00:29:00] can’t close your fingers and you can’t grasp around a paintbrush.

[00:29:03] Tori Martinez: So. The way that I approach things is different now. The way what I do one day may not look that the same way on another day. And I’ve had to come to terms with that. I’ve had to find a lot of different gadgets and things that can help me along the way so that I can keep painting. And I used to at times paint words on my paintings as well and incorporate a poem in there some way or another.

[00:29:33] Tori Martinez: But my handwriting isn’t the same as it used to be, and it’s just not as beautiful as it used to be. So sometimes what I’ll do is I will scan my painting and then digitally put words on top of it and then offer prints to people of that. Instead of the original painting. And sometimes I will still put the words, I have a painting where I put a bunch of different words on there.

[00:29:58] Tori Martinez: So there is a woman and [00:30:00] her mouth is open, and she’s speaking these words out into the universe. And it’s taken the shape of a Van Gogh starry night. And the words are wobbly. And book letters are not straight. And some of it’s kind of hard. And I left it like that because that’s life for me now.

[00:30:21] Tori Martinez: That’s what things look like for me now. And I think other people with chronic illness can relate to that because some times we have wonky days.

[00:30:29] Cheryl Crow: As an OT I totally relate to that. Like the smallest life activities can become so hard just with a little bit of stiffness. You just don’t really realize, right, how complex the human hand is and how often you use it until it’s not functioning well.

[00:30:48] Cheryl Crow: So I think those pivots are really beautiful. I forget the artist’s name, but I think there was like a I wanna say Renoir. I don’t know if that’s right. One of the kind of [00:31:00] classic painters from years ago all developed rheumatoid arthritis. So, and they ended up let me see who it was.

[00:31:08] Cheryl Crow: I’m looking this up right now. Pierre, August. Oh my gosh. I was right. So he’s the one that said the pain passes, but the beauty remains, which is kind of cool. But he ended up doing, instead of paint, he ended up doing some kind of cutout style stuff at the end instead of painting by hand, just because his hands were so affected.

[00:31:27] Cheryl Crow: And there’s some interesting stuff that you can look up about that story. But but anyway I think your examples of pivoting and finding ways like instead of handwriting by hand using computer tools is great for people to hear it. So they, a lot of times people think, well I can’t do it anymore ’cause I can’t hold the paintbrush or I can’t hold the, so I have to, I can’t do anything or I can’t type.

[00:31:48] Tori Martinez: Yeah. There are days when I can’t type. And one of my favorite programs is Dragon Speak. 

[00:31:53] Cheryl Crow: Yes. 

[00:31:53] Tori Martinez: There’s lots of different other voice to text programs that are out there, like Microsoft has a free one [00:32:00] in word, but I’ve just found that Dragon works really well for me and it’s very accurate.

[00:32:07] Tori Martinez: Whereas some of the other ones I have to go back and edit it and say, that’s not what I said. That needs to be a different word. But because I’m like a bookworm and a little bit of a nerd, I really like the idea of telling people that I got to train my dragon. 

[00:32:23] Cheryl Crow: Yeah, no dragons dragon actually speaking is that’s the OG speech to text.

[00:32:29] Cheryl Crow: Yeah. I love that. 

[00:32:31] Tori Martinez: Yeah, so I just think that’s fun to be able to tell people I got to train my dragon and now my dragon writes for me. And so that’s just kind of fun and silly. 

[00:32:40] Cheryl Crow: I love that. I love that. What else helps you cope with the ups and downs, the roller coasters, anything else?

[00:32:52] Tori Martinez: I would say letting it out like that is the biggest thing for me in coping. Because I used to keep things [00:33:00] bottled up so much, which we briefly mentioned that before, if we keep things bottled up, it affects us so negatively. But for me, letting it out. There’s many different creative forms that I encourage the people I work with to do things very differently.

[00:33:15] Tori Martinez: There’s so many different ways you can let out those emotions, let out that anger. So I’ll share another problem with all of you. That kind of is a good example of that because there was one day where we talked about where I was like in that grieving process where I’m not that same person anymore, and who am I now? What is my identity now? So this one’s called, not that Girl. I’m not that girl. I used to be the one before chronic illness visited me. She was brave and strong and carefree. She was tall and slender and healthy. That girl was always early, showed up with a smile on her face. That girl had degrees, got promotions, and made great money every day until that [00:34:00] girl got over committed, overworked.

[00:34:03] Tori Martinez: Over drained. Then little by little, that girl faded away. The smile became a wince from the pain. Then brave to endure the hospital, stays strong to live through the daily strain. No longer on time, always falling a step behind. I’m not that girl. She aimed to please, but yet was never truly seen.

[00:34:25] Tori Martinez: I’m not that girl, not like before. Even others would say it’s not the same anymore. I’m not that girl. She didn’t survive. I’m what was left behind. I’m now the woman who doesn’t always say yes. I guard my time to reduce my stress. I’m now the woman who doesn’t rush. I cherish each moment as if time has stopped.

[00:34:47] Tori Martinez: I’m now the woman who lets herself cry instead of bottling it all up inside. I’m now the woman with wrinkles and scars with a crown of silver hair only wisdom can bring. The wisdom of learning [00:35:00] to be my own boss and fire the doctors who gained from my loss. From being the captain of my ship and the master of my fate, I’m now the woman who sees so much more than I ever could before.

[00:35:14] Tori Martinez: I see the joy and the pain. I see the rainbow. The rain I see tomorrow and today I’m not that girl. She didn’t survive. I’m the woman with the more meaningful life. 

[00:35:31] Cheryl Crow: Whoa. 

[00:35:32] Cheryl Crow: I love that one too. That’s, I really relate, like always on, always wanting to please everyone and be the perfect. I’m putting words in, in your mouth, but that recover, there’s a lot of us in the chronic illness community that are recovering perfectionists or recovering people pleasers, and you it rush or it bleeds into everything.

[00:35:55] Cheryl Crow: ’cause I feel like I was even a people pleaser at my early medical appointments. Right? It’s fine, I’m [00:36:00] fine. Like I don’t wanna bother anyone. It’s like literally you’re here ’cause you’re sick. I know your poem was about a lot more than that, but that’s just what I immediately related to and I love.

[00:36:11] Cheryl Crow: Yeah, I think that’s beautiful. Is there anything more you wanted to say about that poem? 

[00:36:17] Tori Martinez: Yeah, I mean, there, there’s so many different layers and I’ve read it before in public and I have that published on my blogs if anybody’s interested. I have a free blog on my website and I have a blog that goes out every week, so.

[00:36:30] Tori Martinez: I’ve gotten a lot of comments about that particular poem. I’ve had people tell me, you write what I’m feeling. I think, along this journey, one of the best and most interesting things that I’ve got to do is when people reach out to me and they commissioned me to do a poem for them, and I had someone commission me to write a poem about their journey of going blind.

[00:36:55] Tori Martinez: Losing their sight. 

[00:36:57] Cheryl Crow: Whoa. 

[00:36:57] Tori Martinez: That took me on an emotional [00:37:00] rollercoaster. And just sitting down and having conversations with them and asking them questions it comes back to that other quote from Tony Robbins about asking the right questions. If we ask ourselves, if we ask others the right questions, then it can lead us to different answers, better answers, a different way of being, a different way of thinking.

[00:37:19] Tori Martinez: And so helping somebody else get their story out in poetry form. That has been amazing. That’s been an amazing experience for me and I really enjoy doing that. 

[00:37:32] Cheryl Crow: I love that. And that’s really good for people to know who are listening in case they’re interested. And I definitely will be putting your link to your whole website and blog in the show notes for this episode, which are always on my website. And you can obviously put ’em on your website as well too, but I mean, that’s just, yeah that’s really beautiful and I can’t believe it, but we’re already getting to the time for the rapid fire questions.

[00:37:58] Cheryl Crow: You already answered one of them. But we [00:38:00] might be able to, you might have another one you wanted to share, but first, what are some of your best words of wisdom for somebody who might be listening who’s newly diagnosed with rheumatoid arthritis? 

[00:38:13] Tori Martinez: I’ve heard it before on your show. I think a lot of people have said it before, but allow yourself time to grieve.

[00:38:17] Tori Martinez: You really need to go through that grieving process. ’cause if you try and skip it and go to like, where I just wanna get better it’s you’re losing the opportunity to get to know yourself better and the opportunity to redefine yourself and your future and that identity like that.

[00:38:36] Tori Martinez: Sometimes we have an identity loss crisis because we’re now in this new body. So does this new body mean? It’s a new me. And so I think in that grieving process, people can find time to rediscover themselves. 

[00:38:53] Cheryl Crow: That’s beautiful. And was there any other quotes that you like? Inspirational quotes or [00:39:00] mantras for like difficult days?

[00:39:04] Tori Martinez: I think one of the things that comes to mind is a quote from JFK where he’s really talking about what poetry means and what poets do, and that’s always been a quote that’s been in the back of my mind whenever I’m leading workshops or writing books or doing commission poems or anything like, because he talks about where when power leads men to the wrong places, poetry reminds us of our limitations. But poetry also reminds us of our strength. It reminds us of our humanity. It brings us back to a place of being able to commune with each other, where I think poetry has the power and art in any form, I think has the power of creating emotion and being seen and felt before it’s ever understood.

[00:39:54] Tori Martinez: And I think that’s the most powerful thing about creativity and [00:40:00] art in all its forms. 

[00:40:01] Cheryl Crow: That’s so true. That’s so, I’ve never thought of it that way, but it’s you get it, there’s like a gut punch to it, like that painting behind you. I feel that before I can logically engage with it and understand it, like I feel the emotion in it.

[00:40:15] Cheryl Crow: That’s a lovely, thank you. Do you have a favorite, totally different note. Do you have a favorite arthritis gadget or tool in your toolbox? 

[00:40:25] Tori Martinez: I think my favorite gadgets are anything that provide heat. Currently, my hip has been my pain point lately. And so I’ve found this like wrap that goes around my leg and my hip, and it’s cordless.

[00:40:42] Tori Martinez: And so I can walk around, have the freedom of walking around my house and not having, being tethered to a wall that has to have the heating pad plugged into it. And as a bonus, it looks like Laura Croft’s little no way. But she has her gun in, and so I’m like, I’m in [00:41:00] love with that, and that’s my favorite gadget at the moment.

[00:41:03] Cheryl Crow: Okay, well I need to get that link from you afterwards ’cause that sounds amazing. I have never had hip pain until the last year, and then it suddenly happened 22 years after my diagnosis. So it’s not really from my r it’s from Overuse, but I still could use that heating pad. I love it.

[00:41:19] Cheryl Crow: And do you have a favorite? I mean, they probably have a million favorite books, but I always ask for people to share like, a book or movie or show recommendation if you have one. 

[00:41:29] Tori Martinez: I’d say on the book front, like I’ve read so many books and then there are days when my eyes are not functioning like they should be, and it’s really hard for me to read.

[00:41:41] Tori Martinez: And on those days I’ve transitioned to hearing books. So, books and audio form. So i’ve been using a lot more audio books lately, and then on the movie front like when I’m having a flare up where like I’m in bed for a couple of days, it’s really [00:42:00] fun to just watch any kind of series because then it’s something that’s there with you the whole time.

[00:42:05] Tori Martinez: You have to be in bed and you can just watch the next two episode. And so any kind of series is probably a favorite. 

[00:42:13] Cheryl Crow: I love that. Yeah. Especially when they end up that cliffhanger. ’cause they’re like, well, I have to know the next one. And then it kind of gets you in that flow state. Yeah. I love that.

[00:42:21] Cheryl Crow: Well, the last question you’ve already answered implicitly in many ways, but what does it mean to you to live a good life and thrive with autoimmune disease? 

[00:42:34] Tori Martinez: I think because I was like, my identity was so tied to what I did before I got my diagnoses and I still, so an, a thriving life with these illnesses to me means still living a life of purpose and meaning.

[00:42:52] Tori Martinez: So whatever I can do within my limitations and sometimes pushing my limitations so that I can [00:43:00] live a life of purpose and meaning that’s thriving for me. 

[00:43:03] Cheryl Crow: That’s beautiful. I resonate really deeply with that. Is there anything else you’d like to share with listeners before we wrap up? 

[00:43:13] Tori Martinez: Just that what I’ve heard. So sometimes when I lead my workshops and stuff, what I hear people say is I’m not creative, or I can’t be creative, or I wasn’t born with a creative bone in my body. So I’ve heard all of these different forms of that over the years. And I just want to tell people, yes, you are.

[00:43:35] Tori Martinez: You are creative. You were born creative because when you look at children. They have no problem singing. They have no problem dancing. They have no problem coloring and they can color outside the lines and it’s gonna look beautiful to them. And over the years, things happen to us. Our perspectives change.

[00:43:58] Tori Martinez: We have these stories we [00:44:00] tell ourselves and we lose touch with that creative side of ourselves. And so I think that it is possible for everybody to return to a creative state. And what I tell people when I’m doing workshops and things like that is that it doesn’t need to look neat. It doesn’t need to look pretty.

[00:44:19] Tori Martinez: It doesn’t have to be beautiful. It just has to mean something. And as long as it means something to you, then it’s beautiful and it’s perfect. And it did its job. 

[00:44:32] Cheryl Crow: I love that. I really, I mean, I have an 11-year-old and I feel like this would be a good message for me to even reinforce to him. ’cause they get to a point where they can seem sometimes like little kids aren’t self judgmental usually, but then they get a little older, right?

[00:44:46] Cheryl Crow: And then they’re like, oh, well it’s not as good as my friends, or whatever. And then they wanna stop doing art and stop engaging that kind of stuff if it’s, and so I think, sorry, that’s just like where my mind immediately went is I need to hear that for [00:45:00] myself, but also encourage that in my kiddo as well.

[00:45:04] Cheryl Crow: So thank you. Yeah. It’s really about expressing yourself, not necessarily about the end product, looking perfect. Well thank you so much again. It’s been really wonderful. I know we’ve connected on social media for a while, but it’s really nice to be able to talk in real time, and I really appreciate you taking the time to share so much of your story and your vulnerability.

[00:45:25] Cheryl Crow: And I feel very inspired to go be creative today after talking to you. Yeah. I love it. Thank you so, so much. Where can people find you online? 

[00:45:37] Tori Martinez: So the easiest way to find me is on my website and that’s at Vida Meti. Net. And then because from there it links to all of my other social, so you, they can find me on Facebook or TikTok or YouTube.

[00:45:49] Tori Martinez: And so that’s probably the easiest way for people to reach out to me. 

[00:45:53] Cheryl Crow: Yeah, that’s wonderful. Definitely check it out. And you have a book called A Call to Awaken Collection of [00:46:00] Poems, which is amazing. Hopefully people will check that out as well. So thank you so much again, and we’ll catch up with you later.

[00:46:07] Cheryl Crow: Bye-bye for now.

[00:46:10] 

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