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Never Give In, Never Give up, Never Let Go, and Just Keep Fighting: Estela Mata’s Story

3 months ago
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Summary:

In this episode, Cheryl and Estela Mata, a passionate advocate for autoimmune disease awareness and support, discuss their personal journeys with autoimmune diseases. Estela shares how she’s been involved in the autoimmune disease world starting from her early career in healthcare to navigating her sister’s diagnosis with Lupus, and then her own diagnosis with fibromyalgia and rheumatoid arthritis. 

She and Cheryl also discuss the complexities of symptom tracking and diagnosis, challenges of treatment, and the importance of self-advocacy and support groups.

 Estela also highlights her nonprofit organization, Looms for Lupus, which she co-founded with her sisters to provide advocacy, support, and educational resources for those affected by lupus and overlapping conditions. 

The conversation covers personal coping strategies, the significance of community, and the multifaceted nature of living with chronic illness.

Episode at a glance:

  •  Estela’s Advocacy Journey: Estela’s extensive experience in the healthcare industry, working as a medical assistant from a young age, and how her sister’s lupus diagnosis in 2009 propelled her into the world of autoimmune advocacy.
  • Estela’s Diagnosis Journey: Estela shares her long road to a rheumatoid arthritis diagnosis, touching on the difficulties of being seronegative and the importance of tracking and communicating symptoms effectively to healthcare providers.
  • Treatment Challenges: The conversation covers Estela’s experience with various treatments, including her struggles with medications, weight gain, hair loss, and how she found resilience through these challenges.
  • Importance of Self-Advocacy: Advice and tips on the necessity of advocating for oneself within the medical system, and the impact it can have on receiving timely and accurate diagnoses.
  • Looms for Lupus: An in-depth look at the foundation Estela co-founded with her sister. They discuss the support groups, educational symposiums, and bilingual resources offered by Looms for Lupus, dedicated to supporting those with lupus, fibromyalgia, mental health challenges, and their caregivers.
  • Personal Coping Strategies: Estela highlights the strategies she employs to manage her health, such as mindfulness, spending time with family, painting, and journaling. She also emphasizes the importance of asking for help and giving oneself grace.
  • Inspirational Advice: Estela’s key message to listeners: never give in, never give up, never let go, and just keep fighting. She also underscores the necessity of knitting a community of hope and the importance of laughter and friendship.

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:

Estela Mata bio

Estela Mata is a dedicated advocate for health equity, patient empowerment, and community engagement. As the president and co-founder of Looms for Lupus, she raises awareness and support for lupus, fibromyalgia, and mental health. 

She also co-founded Mata Advocacy and Support (MAS), an advocacy consulting firm that fosters connections between patients, industry leaders, and policymakers. With 30 years of healthcare experience and personal insights as a patient and caregiver, Estela works to amplify voices, bridge gaps, and create meaningful change. Through education and advocacy, she inspires others to share their stories and shape a more inclusive healthcare landscape.

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: I am so excited to have my friend Estela Mata on the Arthritis Life Podcast today. Can you let the audience know real quick, just where you live and what is your relationship to arthritis and autoimmune disease? 

[00:00:24] Estela Mata: Wow. So my name is Estela Mata and I am excited to be here. So thank you for having me, Cheryl.

[00:00:29] I live in Baldwin Park, California, and I’m really passionate about raising awareness, advocating and supporting those that live with autoimmune diseases like Lupus, RA, and overlapping conditions like fibromyalgia and mental health. 

[00:00:45] Cheryl: Yeah. I love, I love your passion and I actually you are one of the few podcast guests I’ve been able to meet in real life at the rheumatology conferences, which is so fun to kind of get all these passionate people in a room together to, to share ideas. So we’re gonna [00:01:00] talk about your organization Looms for Lupus.

[00:01:03] But first I would love to hear a little bit of your personal story and experience. What was your diagnosis process like? And yeah, I mean , it’s often a saga, so that’s okay. But it, how did you get diagnosed with RA? 

[00:01:18] Estela Mata: Before I tell you how I got diagnosed with RA, you know, I have to kind of start how I’ve been working in the healthcare industry for over 30 years.

[00:01:26] So, you know, started off as a medical assistant at the age of 17, I was still in high school, so I’ve always been interested in, loved working with patients and with providers, physicians. So that has been one of my go-tos. That actually is what has helped me not only navigate, you know, the whole journey of supporting my sister who almost lost her life to lupus.

[00:01:51] Juana, who you’ve also met, she was diagnosed with rheumatoid arthritis first in 2009 and a few months later lupus and a few other [00:02:00] conditions. So, you know, learning about autoimmune diseases with her, learning how to support her, learning how to empower others has been really, really essential for me and my diagnosis story.

[00:02:14] So, been living with pain since I was 15 that I can remember and didn’t really quite know what was going on. But the one thing that we’ve learned with my sister was always, and, and during our support groups is know all your symptoms. Not everyone’s the same. There are no two people alike and autoimmune diseases.

[00:02:34] Note your symptoms, note what makes it better, note what makes it worse, and kind of see how it impacts your daily life and, and know how to describe your pains and your aches to the provider so they can fully understand where, where the pains are coming from, if is it, is it more muscle, is it more joint, et cetera.

[00:02:55] So in 2018, I was [00:03:00] diagnosed with fibromyalgia, so that’s where one of my first diagnosis was. So healthy, just living with pain all my life, you know, headaches, et cetera. So diagnosed with fibromyalgia in 2018 and about 20% of the people that live with lupus or have autoimmune diseases could have fibromyalgia as well.

[00:03:18] And you know, these autoimmune diseases like to bundle up. So, my diagnosis with RA or rheumatoid arthritis was in December of last year. So 2024 was when I was diagnosed with rheumatoid arthritis. So being able to note all the symptoms, describing my pain and knowing what helped, what didn’t help helped me get that diagnosis.

[00:03:42] I will say one of the things that has been unique and why it’s taken so long for me to get that diagnosis is because I’m what they call, is it seronegative? I think it’s what they call it. 

[00:03:53] Cheryl: Seronegative. Yeah. Yeah. 

[00:03:54] Estela Mata: So, and you don’t hear that term that much and so what that basically [00:04:00] means is you don’t show in a lot of your lab work, a lot of the inflammation factors.

[00:04:05] I don’t have a positive ANA, et cetera. So it was a lot more difficult for me to get diagnosed, so I needed several rheumatologists. So many, many years, many lab work later, and a combination of you know, different of specialists to be able to identify and come with a diagnosis of rheumatoid arthritis in December.

[00:04:27] Cheryl: Yeah. And, and I am first of all, I applaud you for doing such a good job of, like you said, tracking your symptoms or writing down, what does it feel like, not just pain, but where it is, because that’s so crucial for the doctors to make that what they call the differential diagnosis. Right?

[00:04:45] I think it’s such a great testament to you that you did such a good job tracking your symptoms and explaining them to your doctor. And most patients never learn how to do that. And we don’t really have a lot of good words about pain [00:05:00] usually. Right? Unless you’ve lived with it for a while.

[00:05:02] People just think, oh, pain is pain or it’s just this simple. Rate it on a scale of one to 10, but there are different patterns and locations and sensations for like fibromyalgia type pain versus RA or rheumatoid arthritis. And so, I didn’t prepare you for this question, but I would be interested to hear like in your body, sometimes people ask me, in my support groups, in my educational programs, how do I know what is my fibromyalgia pain versus what is my rheumatoid arthritis pain?

[00:05:32] How did you come to learn that, and what are some of the signs for you? 

[00:05:37] Estela Mata: Well, you know, it, it has been difficult, right, to identify. And sometimes, you know, I get both. I’m flaring with both. So it has been one of those challenging things. But I will say for me if it’s more like in my joints, so my hands, you know, my joints, my joint areas, my wrists, my elbows, my knees, hips and stuff like that, then I know it’s [00:06:00] the, the RA.

[00:06:00] So it though there’s more pain and inflammation in the joint areas when it’s fibromyalgia, I get a lot of what I think, I don’t know if I could, I’m saying this right, is it condo? Citis. 

[00:06:13] Cheryl: Oh, like Costo, I say costochondritis, like the information in the chest area. Yeah, I get that too sometimes. 

[00:06:20] Estela Mata: I get a lot of pain when it’s my fibromyalgia around my rib cage and in front of my chest and my back, and and just, you know, a lot of headaches, a lot of, you know, migraines.

[00:06:32] So, that’s how I can kind of identify one with, with the other. 

[00:06:37] Cheryl: Yeah, that’s, that’s super helpful. And you know, for those listening who might be new to the world of rheumatoid arthritis. Typically, the other differentiating pattern would be that rheumatoid arthritis tends to be the worst in the morning or after inactivity.

[00:06:54] So they call it morning stiffness that slowly gets better with movement, with gentle movement and [00:07:00] throughout the day versus fibro. From what I’ve heard, I don’t have personal experience with fibromyalgia to my knowledge, but there’s always possible something’s going on in my body I’m not aware of.

[00:07:08] But but the, with fibro, it’s more of like a constant versus the RA. It might be more like I’m, I follow this pattern of it’s worse in the morning, better as the day goes on, and it’s worse in the distal joints, like the fingers, toes, wrists versus those axial ribcage, pelvis, you know, stuff like that. So that’s a, just for people listening who might not know, I think that’s a helpful little teachable moment.

[00:07:36] Estela Mata: Yes, Cheryl. And, I’m glad you said that because yes, the morning stiffness or the stiffness from sitting or being in one position for a while is where also very huge identifier that I missed. In the morning, you know, waking up or just getting up, after sitting for a long time. Also, it takes a while for the motion to, to, to, you know, to, for me to [00:08:00] be able to, to start moving.

[00:08:01] That’s another way to identify the, that those symptom. Yeah. 

[00:08:05] Cheryl: Yeah. And I, I often describe the pain of rheumatoid arthritis, at least for me as like pressure from the inside out. Like I feel like someone’s squeezing my joint inside towards the outside versus like a handshake where they squeeze from the outside in.

[00:08:22] And I am, I’m not sure if fibromyalgia feels this. You were saying, you were saying. Yeah. It’s more like you don’t feel it radiating out from the inside of your joint. Right? 

[00:08:31] Estela Mata: Yeah. So, you know, another thing that I always, when I explain my fibromyalgia pain is everything hurts. So my hair, my, you know, the straps on my, you know, my, my shirts or just anything that touches me.

[00:08:47] So this, this pain is felt like from the outside in. So that’s, I love that you described that, you know, the arthritis from inside out. Fibromyalgia for me is a lot of [00:09:00] the outside, so I even have explained it to the point where I’m like, I can’t, like, I can feel the air, like the air, the sweater, it hurts me so much.

[00:09:09] So it’s basically amplified sensation of the pain from the outside. So I can’t even hold or have someone touch me when it’s, you know, I’m having that fibromyalgia pain. 

[00:09:24] Cheryl: Yeah. Well, I’m, I’m so sorry. That does sound really, really challenging. And we’re gonna talk a little bit later about how you cope, but I wanted to first know, do you wanna share any highlights or lowlights of your treatment journey?

[00:09:40] Estela Mata: That’s has been one of the most challenging parts of my journey.

[00:09:45] Besides getting diagnosed, no one prepares you for the complexity of the treatments, the complexity of the side effects, and just the overwhelming feeling [00:10:00] about your life changing from one day to the next. So I have to say, for fibromyalgia, I don’t take any you know, and there are, there’s no specific treatment that I take for fibromyalgia.

[00:10:14] So I do a lot of over the counter. I do a lot of cupping acupuncture, et cetera. I don’t take any treatment for fibromyalgia. So little did I know how overwhelming it was gonna be with rheumatoid arthritis. It’s a whole other ball game and set of treatment options out there. So it was overwhelming.

[00:10:37] It’s still overwhelming. So learning about the medications, like I said, the side effects and the constant adjustments to these treatments. You know, I went from taking no medications, so zero medications, unless I had severe pain, you know, for fibromyalgia to taking almost 10 pills a day for rheumatoid arthritis.

[00:10:59] Cheryl: Wow. 

[00:10:59] Estela Mata: [00:11:00] And it was, you know, you have the, the steroids, the prednisones you have, a a, a a swerve. I don’t like to mention too many, like specific treatments. 

[00:11:09] Cheryl: That’s okay. 

[00:11:10] Estela Mata: So you have, you have like the infusions, right? You have the pill form, you have all these side effects and then you, now you need to take medication for over the counter for those side effects.

[00:11:21] And so it’s constant adjustments. So it was very, very overwhelming. And then I was also trying to figure out my weight gain. So I’ve had a lot of weight gain, some medications make you gain a lot of weight, make it a little more difficult to move, more difficult, you know, and then you still have the pain.

[00:11:41] So adjusting to that as well. So I’m trying to lose weight help that so I can move more. Trying to navigate taking the treatments for my rheumatoid arthritis and gaining weight because of some of the treatments, losing my hair. I mean, just, it, it’s [00:12:00] the fatigue, the brain fog. It, it, it’s been really, really difficult journey to say the least.

[00:12:05] But the one thing that I can say is I’ve learned so much resilience and earlier, you know, when we’re talking about resilience, yes, it’s a good thing to be resilient, but it is like you get tired of, of trying to put that face of I’ve got it, I’m gonna be okay and, and being positive. So, it, it, it’s been a struggle.

[00:12:30] But I have to say one thing is you can never learn enough. So read, read about those treatments, the side effects. Learn about what happened during the clinical trials or the trials when with those treatments, learn about what can help you ease those side effects. Connect with others that are dealing or have been taking the treatments that you are about to take.

[00:12:54] And then learn about what you can do prior to these treatments. [00:13:00] So I can highlight one of the things that I never knew was the infusions right. I never thought that I was gonna end up in an infusion chair, so I saw my sister go through it. You know, you, you’ve learn about going to a facility about, you know, being infused for sometimes one hour, sometimes four to five hours, but you can never prepare.

[00:13:22] And so that for me has was the most difficult being there for four to five hours once a week. And I’m trying not to get emotional. It takes a toll on you. And when you have your family that you’re taking care of, when you have your husband, you have a community that you wanna be, you know, strong for too, and support it, it’s, it’s overwhelming.

[00:13:53] And then you’re in an infusion chair, so help helpless at times [00:14:00] because you don’t know what you’re putting in your body and what the impact’s gonna be. Is it gonna help you? How long is it gonna take to help you and all of that. So it, it’s been really a tough journey. I, I have to say, but nothing is given to me that I cannot handle.

[00:14:16] And I have to say, I’ve had a lot of support for my family, for my friends, people like you. And, you know, I just keep, keep thinking that things are gonna get better and not lose hope. 

[00:14:29] Cheryl: Yeah. Well, and, I just thank you for sharing, sharing your story. And I think I, I got really lucky initially that the first medicine I tried worked really well with no side effects.

[00:14:42] So I kind of built this positive association with the medication. But I know that that’s not, obviously not the experience everyone has. And I, and I completely you know, know that people listening are gonna resonate with what you said. It is a strange, you know, for [00:15:00] me it was almost like an identity crisis, like sitting in that infusion chair the first time.

[00:15:03] ‘Cause it was like but the medicine’s working. So I don’t feel sick, like the way that other people in this room are like, ’cause everyone else in the room, I don’t know about yours but mine, everyone else was like there for cancer medicines. So yes, I’m watting in there with like my little swing dancing dress and you know, they’re like, who is this?

[00:15:20] Like, why is she here? Anyway, sorry.

[00:15:22] Estela Mata: No, no, I love that you share that, Cheryl, because I, that was one of the things I almost felt like sad that I had to share a space and I felt like I wasn’t as sick as they were. And I don’t know what that, there’s a term for this. And when I would walk in, you’re right, you know, everyone’s sharing, you know, some people share, you know, their journeys.

[00:15:49] Oh, what, what, what treat what, what’s this number treatment for you? And you know, they don’t have hair and they’re going there for cancer treatments and you’re there and you’re like sorry, [00:16:00] I’m just here, you know, for my infusion, for my RA. And you almost feel sorry that you have like something easier to, to deal with.

[00:16:12] Cheryl: Yeah, I think it, yeah, and I, I think everyone’s journey is just so relative too, because I’ve, I’ve had people in the support groups who’ve said, even who’ve had both cancer and rheumatoid arthritis and said, depending on the severity of your cancer, how early they find it, like one of them said, you know, I hate to say it, but honestly their rheumatoid arthritis was harder for them than their cancer too.

[00:16:36] So, but there’s this impression societally, right, that because RA is not immediately life threatening. It does, if not controlled have a, on average seven year reduction in lifespan. So it is taking years off of your life, but it’s not as immediate right, as cancer where it’s like you could die in the next, you know, couple years.

[00:16:59] So it [00:17:00] seems like this less serious thing. It’s just, yeah, I think it’s imposter syndrome, I think, I don’t know if that was.

[00:17:05] Estela Mata: Yeah. That’s why I was looking for that term. And you’re right because, a lot of people, you know, also associate, you know, cancer with like death and, oh, you have the, oh, I’m so sorry to hear this, but people with autoimmune diseases that have organ involvement, like with my sister with lupus, you know, you don’t get that same thing.

[00:17:25] We don’t get it with rheumatoid arthritis and we can possibly have organ involvement, right. Yeah. So it is, it is one of those things where, I don’t know what, what is worse to know that you’re diagnosed with one or the other. I just know that I’m very empathetic to anyone that has to deal with any sort of autoimmune disease or cancer or chronic illness diagnosis that is life changing.

[00:17:51] Cheryl: Yeah. Yes, a hundred percent. And if anyone listening is, you know, maybe preparing themselves for their first, you know, infusion appointment or their first [00:18:00] injection, or their first oral medication.

[00:18:03] One thing, or I’ll share two quick pieces of advice that have helped me in the past and others. One was from Dr. Christine Stamato, who I’ve had on the podcast. She’s a nurse practitioner. You might have met her at one of the conferences. She’s very energetic, really a great speaker. And she said, I tell my patients who are, who are nervous about medication, think about it like dating, not a marriage like that. It’s, you know, you try it and it, it’ll be outta your system.

[00:18:31] Like it’s very rare for if it doesn’t work and you have bad side effects, it’s at, it can be outta your, it’ll be outta your system. So you don’t have to worry that it’s like, it’s extremely rare, but it does happen. So we have to be aware of the possibility. But it’s very, very rare that a medication for RA would have some sort of horrendous, lifelong complication for you.

[00:18:50] So that’s what I think of the odds are in your favor for the medication. Either the medication working and not, you know, just statistically the medication tends to [00:19:00] work. And, but it it can’t, it may work with the side effects being so bad you don’t wanna continue, in which case there are numerous other ones to try.

[00:19:08] So that can be, that’s something that I say to comfort myself when I’m, I’m on my fifth different kind of treatment combo in 22 years. And so each time I’m kind of like, go through that same cycle of being nervous, but I’m like, okay, but if this one doesn’t work, I will, I will survive. I’ve survived a hundred percent, you know, the worst days.

[00:19:24] Estela Mata: And I’ve tried several too. So it’s also, I think, very good to know that there are options. So you have options. If one doesn’t work you know, you can, you know, speak to your provider and your rheumatologist and, and look for other things that, that can help you or other treatments. So know that there’s always, you know, options out there.

[00:19:44] Cheryl: Yes, a hundred percent. And you know, one of the things I wanted to also have you share today, your experience is rare because you were in the autoimmune world before you got your diagnosis because of your sister. And I think what you’ve done with you and your sister and your [00:20:00] community with Looms for Lupus has been so wonderful.

[00:20:03] Can you just share, I actually don’t know, or maybe I knew and forgot, so sorry. If you already told me in the past the origin story for Looms for Lupus, by the way, I will put links to Looms for Lupus in the chat. You know, what is it? How did it get started? Your superhero origin story. 

[00:20:23] Estela Mata: Well, thank you. So, Looms for Lupus is a nonprofit organization that my sisters and I founded in 2012.

[00:20:30] So our mission with Looms for Lupus is to provide advocacy, awareness, and support for those living with lupus and overlapping conditions like fibromyalgia and mental health. But we not only support those individuals living with these conditions, we also support their loved ones and caregivers. We provide bilingual programs, workshops, and tools not only to educate them and raise that awareness, but also to empower them, to empower those individuals to take charge of their [00:21:00] life despite what they’re going through, right?

[00:21:02] We want to continue to live, we want to continue to take care of ourselves and, and just look out for, you know, to have a better better healthcare outcomes, really. And so, we collaborate with so many amazing organizations with everything that we do. Community partners, patient care facilities, government agencies, and industry stakeholders.

[00:21:27] Anyone really that is, is working on similar things that we are, which is empowering the community, supporting the community, and ensuring that they have the better the best healthcare outcomes that they, they deserve. With that being said you know, we started our journey in 2009. Like I said, Juana almost died of lupus before she got her diagnosis.

[00:21:48] So she was diagnosed with rheumatoid arthritis and then a month later on in the month is when she was diagnosed with lupus. And lupus back then, there were no FDA approved treatments for lupus. So it’s all borrowed [00:22:00] drugs, right? Medications. And she had been struggling with rheumatoid arthritis, I mean.

[00:22:05] I mean, you can’t even imagine like, it, it was horrible to see her getting up in the morning so stiff, not being able to move with her hands, you know, literally clenched like this, and her having to massage her her way through them. So we knew that not only was rheumatoid arthritis and lupus impacting her , it was impacting her physically, but also mentally.

[00:22:31] And it was gonna impact her children who were young at that age. Her boys. Now she’s a grandmother of two boys as well. So, you know, we get to share all of this. So we wanted to include everyone, the husbands, the moms, the sisters, the community, the children, everyone. And we wanted to also foster in that sense of community, but also learning about different methods, what causes a flare.

[00:22:59] [00:23:00] Stress. Stress triggers the flares. How can we alleviate that but also help our mentally, our mental state during a diagnosis, a life-changing diagnosis. So we incorporated a lot of psychosomatic different workshops and different ways of learning. So the word looms is from Loom knitting. So my sister Juana started Loom knitting as a method to kind of alleviate her stress and, and focus on a mindful project that she was doing to kind of not think about the infusions, you know, and everything she was dealing with.

[00:23:35] So loom knitting was her way of, of dealing and, and helping her through throughout the process. My mom crochets in Mexico. So we’re originally from Mexico, and my mom crochets. And so we included my mom. So my mom would crochet, my sister would loom knit, and we just would get together on the weekends and, and, you know, just talk about what she was going through, how we could support her, and learning more about the condition.[00:24:00] 

[00:24:00] So we did that and within an organization, so we started doing support groups. We host support groups virtually and in person. So we have a reach all the way to international reach. And so we reach out to community members, both in English and in Spanish, provide support groups and it, within the support groups we include different modalities to alleviate the stress and, you know, give tools and tips on how to navigate the journey.

[00:24:27] So that’s what we do. 

[00:24:29] Cheryl: Amazing. 

[00:24:29] Estela Mata: And that’s how we started. 

[00:24:31] Cheryl: Yeah, and I mean, I really, you know, everything you do is is totally up, up my alley as, as my parents would say, oh, that’s just, that’s up your alley. I don’t know if people say that anymore, but, you know, I love support groups and I think it’s just so, so needed to have bilingual ones as well.

[00:24:50] I think that’s just such an important service. I, I have people reach out to me and say like, do you have any bilingual resources? And I’m like I need to, I don’t have any yet, you know, and I’ll, but I’ll direct them to [00:25:00] people.

[00:25:00] Estela Mata: Like, you could direct them to us. 

[00:25:03] Hablamos espanol. 

[00:25:05] Cheryl: So you, well, and, and so.

[00:25:07] It drilling down to the specifics. So is it on, are your, are your groups on, like I know you do some on Facebook, right? Facebook Live. Are other ones, are they on facebook? 

[00:25:18] Estela Mata: So the support group, so we have the in person and virtual. So we are physically in Baldwin Park and from there we connect virtually, so anyone from anywhere can access through Zoom.

[00:25:30] So the virtual support groups and in person support groups are at the same time. We just have the camera. 

[00:25:36] Cheryl: Oh, synchronous. 

[00:25:36] Estela Mata: Synchronous. Yes. So at the same time, and anyone can join us, they’re completely free. We are. We host them every second Saturday of the month. So the English one, or bilingual as we call it, it’s more like English now 9:30 AM every second Saturday of the month, and it’s all on our website and the Spanish one every second Saturday of the month as [00:26:00] well after our English one.

[00:26:01] And that one is 100% in Spanish, also virtual and in person completely free. And it’s amazing to be able to connect with many people from all over the world. Obviously the treatments are not the same. I do have to say that, you know, because when we have someone from like Peru, Mexico France, you know, anywhere else in the world.

[00:26:25] They don’t have the same treatments that we do. So it’s also a learning experience for all of us to figure out, you know, how we can support one another, knowing that not all of us have the same options. Right? Yeah. So it’s, it’s been really, really amazing to be able to support each other through, through our journeys no matter where we live.

[00:26:46] Cheryl: I love it. And you have so many in addition to the support groups which I’m definitely gonna be making sure I share those links out to everyone in the show notes. You also have really great educational materials, which I got to [00:27:00] see in person at again at the booth when we, when we could talk about going to these conferences.

[00:27:05] Yeah. Different groups have Booth and you can, and it’s a really great experience to kind of be able to, 

[00:27:10] Estela Mata: so I’ll, I’ll share with you. 

[00:27:11] Cheryl: Tell me more about those. Yeah. 

[00:27:12] Estela Mata: Yes. So besides the support groups that we do that are completely free English and Spanish, we do what we call a, which is a chat with the Mata sisters.

[00:27:23] That one is completely in Spanish and it’s about chronic conditions, mental health, family and everything in between and health awareness. And that’s in Spanish. And that we do every second Saturday of the month at 8:00 AM And that’s through Facebook Live. So we’re on Facebook live, on YouTube, and we used to be on Twitter Live, but you know, ever since there were changes, we can’t do that.

[00:27:47] Yeah. But yeah, YouTube and Facebook Live every second Saturday of the month. Placita con las hermanas Mata, My sister and I kind of share experiences we bring you know, we talk about everything, family, everything, [00:28:00] chronic conditions, everything, awareness. Besides that, the, what you’re talking to about is a life symposium. So we have educational life symposiums, or if you will, like, kind of like a short program where you get to learn about different, different topics.

[00:28:16] So we’ll bring in guests, kind of like what you do in your podcast. We bring them in, but they’re live on Facebook and on YouTube, and the recordings stay there and we invite people to come and share their journeys share their stories. We also invite professionals to come and share about, like, clinical trials, what are clinical trials We invite other professionals to talk about like mental health. I mean, just a variety of things that we know that our community needs to hear about. One of the biggest things right now that we have been doing is trying to figure out what the gaps or the needs are in our communities and provide that.

[00:28:53] So if someone, you know, needs assistance with financial literacy, you know, it impacts all of us. Then let’s have an [00:29:00] education symposium on financial literacy. So that’s what we’re doing. So we bring on those educational live symposiums and the recordings on, on social media. 

[00:29:11] Cheryl: That’s so great. And another thing I loved was that I know you collaborated on is the Living Well with Lupus toolkit.

[00:29:20] Estela Mata: Mm-hmm. 

[00:29:20] Cheryl: Which I just, I’m kind of obsessed with the idea of like building a toolkit or a toolbox, you know, as a metaphor. ‘Cause we have so many tools, but it’s overwhelming right, to sift to them. 

[00:29:30] Estela Mata: Yes. And that’s, that’s one of the things that you saw in our booth at the Lupus booth, is we, so, like I said, we collaborate with other like-minded organizations, big and small and you know, at the grassroots level, at the federal level.

[00:29:44] And one of the things that we did is we connected with a Society for Women’s Health Research. And they’re a big organization that’s working on research for women or including women in research and advocating. And, you know, there was, a huge movement that they [00:30:00] did.

[00:30:00] But what we did a few years ago is they reached out to Juana, who lives with Lupus, and myself as a caregiver care partner, and they also included another patient perspective ayana Ducey. She lives with Lupus, she’s a comedian, amazing girl. And so bringing in all of the researchers and, and rheumatologists a group of professionals and the patient perspective.

[00:30:22] So all of us included the first toolkit ever. It’s only in English and it’s completely free for everyone. And what what I did is I told them, I know we don’t have funds to print these out, but give me one.

[00:30:35] I’ll take it to the booth at the American College of Rheumatology you know, conference well, not the American, the the Rheumatology conference. Yeah. Where everyone from all over the world come. I will have it in my booth, and I had the QR code and now it’s shared with everyone. There are no funds to do a Spanish toolkit, but I am working on getting one, hopefully done, and so I’m pitching [00:31:00] the idea, so look for that in the, in the, in a few either the end of the year or beginning of next year.

[00:31:07] Cheryl: That’s just, that’s amazing. I mean, and I as somebody who’s also kind of multi-passionate and living with chronic illness, I’m, I’m curious, again, I didn’t prepare you for this question, so feel free to be like, I’m not sure, but I, I sometimes struggle to like find a balance in my life when I’m like, okay, I made this thing called Arthritis Life. Like arthritis is my life, quote unquote.

[00:31:28] But like also, I need to have balance in my life and have time where I’m not just thinking about arthritis all the time, because otherwise it can be a little stressful. How? How do you manage that? Do you know what I mean? Or just take care of yourself.

[00:31:44] Estela Mata: Yes. No, I completely understand what you’re talking about because, so my sister and I run the nonprofit. So Juana is a social worker by trade, so she supervises social workers. so that takes her mind off. The, the, the nonprofit and [00:32:00] lupus and you know, RA and everything in between and the mental health aspect of it.

[00:32:04] Everything. We, we, we have a, we live two lives, as I tell her. So she works for the department of, of children’s services. So she’s reunifying children, you know, if you will. And so that helps her. I also work in healthcare it, so I work helping and working with providers and patients. So for me, that’s my little escape from, from the reality of all these challenging things that we, that we go through.

[00:32:33] So that helps us. And also what we do is we spend a lot of time with our family, very, you know, active with our family. We get together every weekend. We have a very big family where there’s about 40 to 50 of us. And so that’s how we keep our, our mind off and we’re very active in our community as well.

[00:32:50] And so that’s how we kind of just keep, you know, pushing through everything that we’re dealing with on a daily basis. 

[00:32:58] Cheryl: I just, I, [00:33:00] I have to comment because it is so funny to me that there’s a stigma or a misconception that people with chronic illness are quote unquote lazy because like everyone, and maybe it’s a self-selected to population, but everyone I interact with is like you, where you’re like, you’re literally like, how do I find a balance? It’s not like taking a bubble bath or relaxing. You’re like, oh, my job, my other job is, 

[00:33:25] Estela Mata: that is so true. But I, we do take time for ourselves. So I’ll tell you. 

[00:33:29] Cheryl: And you did say family too.

[00:33:30] Estela Mata: But it’s so true because that is what a lot of people tell me. They’re like, can you stop?

[00:33:35] Like, do you ever take time to stop? And I actually do. So I will tell you, I am not a yoga person. So do not, I talk a lot. And you could tell, right? So don’t put me to do yoga and be quiet because I’m gonna cramp. I cannot stay still and I’m gonna want to talk or laugh if you tell me to be.

[00:33:58] So yoga didn’t work for me. [00:34:00] I’ll talk what worked for me. And this is what helped with a lot of, there’s a lot of ways to ease your mind and to help you kind of feel centered. And for me, I don’t knit. So no knitting for me. I occasionally paint, so I like to paint. I like to journal and write. And so mindfulness is, has been my, my go-to.

[00:34:19] I like to go outside and smell the roses. Like when I tell you, smell don’t make me plant, I will not garden. But if you garden and water the flowers, like I tell my husband. I go outside and I enjoy that. I like to use you know, what we call mindfulness. So ground myself barefoot. I love to be barefoot on the grass, love to feel the dirt.

[00:34:41] I love to smell the roses. I like to feel all the feelings. So the wind, my hair, you know, the sun, which I can’t get too much of sun. 

[00:34:50] Cheryl: Me neither. 

[00:34:51] Estela Mata: That’s another thing. Like I get like, it, it flares me. I don’t understand why everyone keeps saying, go get some sun [00:35:00] because of your vitamin D deficiency. I’m vitamin D deficient, so I take about 50,000 units a week.

[00:35:05] And so no, I cannot get under the sun as much as I wish I could. So I have to be careful, but I love being outside. I love spending time smelling the flowers, if you will. So that’s my way of of taking, you know, a little bit of self-love, self-care. I love doing my makeup, love doing my hair.

[00:35:24] So that’s a way for me to make me feel better and, and make me feel alive and not focusing on, on me feeling ill or having the pain. And that’s the same with my sister. She though I will say is a lot better than I am. She does a lot of like specific you know, anti-inflammatory diets. She tries a lot of like, natural ways of, of healing her body.

[00:35:50] She does a lot of sauna. She does the ice, you know, the ice what is it? Ice baths. And the, red light therapy. She tries a lot of that. And so [00:36:00] we both have a very different way of, of taking time for ourselves. But most of the time where we get most relief is doing the things that we love.

[00:36:10] Cheryl: I think that, that, that is crucial. And you know, she’s, I wouldn’t say she’s better or you’re worse. You’re both doing what feels right to you and trying to live life on your terms, you know? And I think that that’s beautiful. You know, I think journaling, painting, writing, spending time with family. I love that.

[00:36:30] One of your hobbies is, I wrote this down as a hobby, but activities that involve talking, because that’s totally me too. I once made a joke to my therapist that I had gone on a silent retreat for three days ’cause I was like, it’s so hilarious to think I would ever do that. And he was like, really? And I was like, no, never. That’d be torture, but I should try. I, there’s this part of me that feels like I should, anyway. That’s fun. It’s one of those things where you always feel like you should be doing something. Or 

[00:36:59] Estela Mata: if you ever [00:37:00] go to one of those, I might, I wanna go watch you. 

[00:37:02] Cheryl: I’ll explode within like two hours. I’m not talking i’ll.

[00:37:08] Estela Mata: I can’t do yoga. 

[00:37:09] Cheryl: I can do, I can do yoga for some reason. But anyway, yeah, it’s just, it depends on the type though. Yeah. The slow yoga is harder for me. The faster ones where you’re kind of moving and having to, yeah.

[00:37:20] But, but you know, there’s one of the kind of, there’s the explicit things we talk about on the podcast, and then there’s also these kind of undercurrents of themes that I keep track of in my mind as I’m doing the episodes.

[00:37:32] And one of them is that I hope people get from listening to multiple stories is there’s no one size fit all, you know? 

[00:37:38] Estela Mata: No. 

[00:37:39] Cheryl: And we can say that all day long, but people have to really hear the specifics of the stories to get it. I think. 

[00:37:44] Estela Mata: Yes. And some days are easier than others, right? So there are days that are gonna be incredibly challenging.

[00:37:52] So know that there are gonna be those days, and then also know that there are other days that it’s gonna be a lot easier for you to, you know, [00:38:00] go through it. So it’s, it’s literally, you know, there’s no book on coping with all these ups and downs that we, that we live with or we go through living with a chronic illness, especially with pain, right?

[00:38:11] You know, it’s, it’s an, it’s an ongoing and never ending process. And the learning curve never really subsides. You’re always learning something better and you learn from others. So I love that you do support groups, Cheryl. And, and one of the things that I have to say is support groups are not like, you know, you’re in a circle and it’s all crying.

[00:38:31] It’s not that you get to learn from others living with something that you are living with. So that’s very empowering and you get to also teach others without even knowing. Yeah. The, on the, our first support group, we had a lupus. Someone living with lupus that had been living with lupus for 30 years, all she had to say to us, because it was during our first, like, literally it was our first support group is, hi, my name is such and such, and I’ve been living [00:39:00] with lupus for 30 years, and my sister and I grabbed our hands and we literally started crying.

[00:39:07] She didn’t share anything else but that, but that gave us hope. Hope that she was going to continue to live. Despite living with a condition like lupus.

[00:39:22] Cheryl: That is so powerful and it resonates with one, one of the first times I ever spoke about rheumatoid arthritis to a public audience was in 2010, I was asked to go to the juvenile arthritis family camp, which is really cool.

[00:39:40] They do it through the Arthritis Foundation in Washington State, and they have, like you mentioned earlier, family centered care where the, it’s not just the child with arthritis, it’s their siblings and their parents are invited to this camp. And I had all these ideas of all the helpful things I was gonna be telling these parents.

[00:39:58] Right. And the [00:40:00] feedback I got from, I told ’em a bunch of stuff about my story and at the end they were like, the feedback I got was, wow. It’s just, it’s great to hear that like you have a boyfriend or that you swing dance or that you like, and I’m like thinking, sitting there thinking like, well, yeah, of course, but, but what I thought I was gonna blow your mind with telling you about some great way that I’m coping or whatever.

[00:40:24] But it’s like, I get it now that people, they want to be able to envision a life for themselves. And it feels like your life’s over when you get diagnosed and so hearing, sorry, I’m, I’m expanding on my story, but I 

[00:40:37] Estela Mata: No, i, but this is, this is what I love about these conversations. Yeah. You went in with an expectation of what to what it looks like.

[00:40:49] You wanted to share with them what it looks like, looks like living with a condition like RA in your life and you thought that was gonna help them because that would’ve helped you. And we [00:41:00] always think about what can I do to make it easier for them when sometimes all someone needs is for you to be there.

[00:41:08] For you to be there next to them and maybe say the smallest thing. And I think that’s the beauty of connection, is connecting with others, dealing with something similar than what you’re dealing with because you never know how you’re filling that void or that emptiness that they’re feeling. Because when we get diagnosed with these conditions, the providers are amazing and I love them and I respect them.

[00:41:34] But they give you this diagnosis and then they send you home with maybe a pamphlet with maybe, and not I was not sent with a pamphlet. I was not sent with anything. My sister went into ICU for seven days if she, she was dismissed actually. And so she was sent home and she advocated for herself. And if she would not have advocated for herself, she [00:42:00] would’ve died that night.

[00:42:00] Her platelets were at two. So you never know what the individual’s going through, and that’s why for us, it’s so important to advocate for yourself, for your loved one, because you never know how that’s gonna change the dynamic. So my sister’s alive today because of that, and that is why we share her story and that’s why I think your story is powerful too, because sometimes the simple, the simplest things of let the doctor know.

[00:42:27] Let them know what you’re feeling. 

[00:42:29] Cheryl: Yes. 

[00:42:29] Estela Mata: Let them know it’s not okay. Let them know that you want options. Let them know that this is not working. Let them know that this is working. You know, work with people, talk to people. It is all needed, you know, and the support groups, the advocacy work that we do, excuse me, and prioritizing our self care to being able to continue to do the work that we’re doing for us has been essential.

[00:42:55] Connecting with people like you has been essential. So it is [00:43:00] amazing how powerful to connect with someone else is 

[00:43:04] Cheryl: A a hundred, a hundred percent. And I just, I wonder, yeah. I really wonder my story about, I, I’ve told the story before about my first time speaking about rheumatoid arthritis, but I wonder if I had them already just by saying in 2010, my name’s Cheryl.

[00:43:20] I’ve had rheumatoid arthritis for six years. That’s probably all I had to say. You know, and I’m, and I’m living a life. I have a job and I’m take my medicine every day, every week. And that’s probably all they needed to hear. 

[00:43:35] Estela Mata: Yeah. And look at all the amazing things that you do. Right. And I think for us, that was hope.

[00:43:41] It was not losing that hope. 

[00:43:43] Cheryl: Yes. 

[00:43:43] Estela Mata: Of we can still make a difference. We can still continue to live a life, a full life with, you know, many things. So not only are you getting to live Cheryl, you’re getting to help others. You’re getting to empower others. You’re giving that hope [00:44:00] to those newly diagnosed and those that have been diagnosed, that there is opportunity to continue to life to live a life, a full life.

[00:44:09] And to me, I think that’s probably the best gift that, that we can do. And if we never accomplish anything else, but give that hope or have those that are giving up on that hope to, you know, light that fire again and let them know that it’s gonna be okay. Because that’s another thing is you don’t know that it’s gonna be okay when you’re given these diagnosis and knowing you have to take medication for the rest of life, knowing that other autoimmune diseases might come your way, knowing that it may impact your daily life, the way you shower, the way you get up in the morning, the way you hug your husband, the way you hug your kids, the impact that it’s going to have on your social life, and people thinking you are lazy, people not inviting you anymore to their functions.

[00:44:57] People thinking that you are [00:45:00] faking things because you look amazing, you look beautiful. People thinking that you know, that you are, you know, different than anyone else or because of what you’re doing. And, you know, for us, you know, I, I have to say, you know, that has been really humbling because we, we have had those bad days.

[00:45:18] We’ve had my sister in ICU, we’ve had, I have gone through my own struggles. But at the end of the day, you know, we’re able, we had a mental health walk. We co-hosted a mental health walk a few weeks ago, three weeks ago. And I walked along the side with my sister with my mom and with my five-year-old and my other two daughters, and my husband and the community members and everyone.

[00:45:44] And it was amazing to see that in 2009 my sister was in ICU. And look at all these years later, we’re walking the city and, and helping others. And empowering others. 

[00:45:59] Cheryl: That’s, [00:46:00] I mean, I didn’t, I knew she was close to death, but I didn’t know her platelets when you said their platelets were two, that painted such a vivid picture in my head of just how close, and that does.

[00:46:13] I think that learning to advocate when, when we, when I first heard like nonprofits and or educational organizations talk about advocacy, I thought it meant just like legislative advocacy, which is huge. Like I’ve spoken, you know, in Washington DC to my, remember, you know, federal representatives and in my state capital and stuff, but advocacy at every single level.

[00:46:36] Like I, I used to just be like, well, these, these are the authority. Like the doctors, they went to school for 10 years. And I do think we have to find a balance and respecting that authority and not question like every single thing your doctor does, but there are so many instances of people who are dead because they didn’t advocate for [00:47:00] themselves and everyone the, you know, the, they got turned away from the ER or got discharged.

[00:47:05] Estela Mata: Yeah, and, and that’s exactly what happened to my sister. She was diagnosed with anxiety because she said, I, there’s something wrong with me. Look, I have bruising, I have oral sores in my mouth. They’re like, they look like open wounds. I have petechia on my body. I, my hair lost, my patches. I have all, 

[00:47:21] Cheryl: but she had all these physical symptoms and they still said 

[00:47:24] Estela Mata: Physical symptoms and they said, we’ll, do lab work. Come back tomorrow, go home. She said, no, I was on the phone, I was on the portal and I told her, your labs are not there. So I said, go ask for stats. She goes, and she asks for STAT labs. They’re like, no, no, no, they’re routine labs. You’ll be here tomorrow, blah, blah, blah. So she got, she was diagnosed with anxiety and I told her, do not leave.

[00:47:48] So then

[00:47:48] Cheryl: good for you. 

[00:47:49] Estela Mata: They checked and within hours her platelets had went from eight to six or 8,000, you know, eight to six to two. And when she was diagnosed, it was a shift change of [00:48:00] doctors. And the doctor that diagnosed her, when I ran to the emergency room with her I said, could she have lupus?

[00:48:05] And he’s like, who are you? Are you a doctor? And I said, and back then you didn’t hear a lot about lupus, but I had put all her symptoms together, the hair loss, the fatigue, the, the rashes, the oral sores, no sore, no sores, mouth sores, joint pain, everything together. And I said, this is the only thing she could have.

[00:48:24] But all I knew was she could die and there was no cure and there was no treatment. So I didn’t wanna tell her. And so when the doctor confirmed she had lupus, like I said, ICU seven days. So she would not have advocated for herself, she would not be alive. And that has been her journey. And she says this, she says, we are the CEOs of our bodies.

[00:48:45] We can hire and fire and get as much help as we need to be able to run this ship. Right? And so that’s what she does. And so she shares her story to empower others to work together with their [00:49:00] providers, to you know, your care team is part of your team, and in order for you to function, you need, you need to be able to communicate with them, trust them, just like they need to trust you and everyone in between.

[00:49:14] So that’s 

[00:49:16] Cheryl: So, so important. I really didn’t know that I had to be the CEO of my care team for probably the first 10 years I kept thinking that someone was out there organizing it all for me. No, that was honestly a privilege. That was probably from privilege of having my parents always helped me so much with stuff.

[00:49:36] So, but point being, yeah. Sorry you made that well, 

[00:49:38] Estela Mata: but I love that, that you said that, you know, privilege is another thing, you know, that not everyone think not everyone has the access to care. So my sister was lucky to have access to care. My sister was lucky to advocate for herself. She was lucky that I knew how to navigate the healthcare system.

[00:49:55] And that is another set of things that, you know, maybe it’s for like another podcast [00:50:00] we can talk about, hone in about all these other factors that play a role in, in us getting a a, an accurate diagnosis, A prompt diagnosis before it’s too late. Right. Yeah. So, you know, and, and everything we have to navigate.

[00:50:15] But what I do have to say is the advocacy part is yes, we have to self-advocate. So advocate for ourselves, advocate for our loved ones. We have to also learn to share our stories because there’s pol, there are policies in place at the state level and federal level that impact our care. And so, you know, the fact that you, Cheryl shared about going to DC. We did the same thing.

[00:50:39] We were like, we need to advocate for care. We need to advocate for these policies to change, for access to care. We need to advocate for more research. And so we’ve been able to do that. We’re very huge advocates. We just actually partnered with Global Healthy Living Foundation and CreakyJoints. 

[00:50:57] Cheryl: Oh, well, yeah.

[00:50:58] Estela Mata: That’s, 

[00:50:58] Cheryl: that’s the parent company [00:51:00] of CreakyJoints for those 

[00:51:01] Estela Mata: yes. So they created, so we’re very big about clinical trials. So like I said, there were no FDA approved treatments before for lupus. Now there’s a few, but clinical trials and participation and learning about clinical trials was another, you know, whammy that everyone has to deal with.

[00:51:18] Yeah. And not everyone. Gets to learn about, you know, where to get this information. What is a clinical trial, what does it mean, you know, what does it entail? So we are huge advocates of that, of that. And so we, there’s a, a, a, a website that was just designed specifically on clinical trials with lupus that they have, and our faces are on there and our contribution.

[00:51:41] So we’re very excited about that. 

[00:51:43] Cheryl: Well, I will put that on in the show notes. Unfortunately time-wise, I do need to go to the rapid fire questions, but I think we should do a separate episode, maybe a panel on advocacy ’cause I think that’s, so it’s another one of those themes that’s interwoven in multiple episodes.

[00:51:59] But it’s [00:52:00] so important. I mean, you’ve given so many words of wisdom that would be helpful for someone newly diagnosed. Is there anything else you would wanna say, maybe to somebody who’s brand new, diagnosed with, you know, either Lupus or RA or fibromyalgia? 

[00:52:14] Estela Mata: Give yourself grace. It’s okay to not be okay every day.

[00:52:20] The journey’s gonna be tough. There’s gonna be ups and downs, but you don’t have to go through it alone. That’s what I, I do wanna say. And I have to say, you know, for my, my little sister who created, you know, helped us, you know, with the organization, she created a slogan for us. And it’s called it, well, this is what it says, never give in, never give up, never let go. Just keep fighting.

[00:52:47] And that’s what I want everyone to know. It is not the end of it all when we get these diagnosis. So never give in, never give up. Never let go and just [00:53:00] keep fighting. And so that slogan is what we have in our t-shirts. And I’m actually gonna send you one, I don’t know if you’ll be at the, unless I can, I can mail it to you.

[00:53:08] But I want to give you one, oh, we have that. It’s our slogan. And 

[00:53:13] Cheryl: I, I love it. I think it’s gonna be a title of the episode, honestly. 

[00:53:16] Estela Mata: Yeah, we can do that. And then the other thing that I always say is, you know, together we are knitting a community of hope, one loop at a time. And the reason we kind of never wanna change our name because people are like, why loom?

[00:53:30] Why looms, why looms? Because my sister is alive. And loom knitting is what helped her get through the first phase of it all and my mom crocheting. And we, we want to say, we want to knit, continue to knit a community of hope because a community is everyone. A community makes us feel together and we don’t wanna ever lose that hope.

[00:53:56] And that’s what we’ll continue to [00:54:00] doing. Tejiendo una comunidad de esperanza. Knitting a community of hope not. 

[00:54:03] Cheryl: Okay. I am, I’m at like an intermediate level of Spanish, so I knew hope. I didn’t know the word for knitting. Thank. Beautiful. It’s beautiful. And I think it’s a great metaphor, A beautiful metaphor actually. So do you have a favorite like, inspirational saying or mantra for difficult days?

[00:54:24] Estela Mata: It’s gonna be okay. 

[00:54:26] Cheryl: Yeah. 

[00:54:27] Estela Mata: It’s gonna be okay. You know, oh my gosh, I’m gonna get emotional. Okay. 

[00:54:34] Cheryl: Emotions are okay. That’s what I know it is. Feelings are for feeling. My therapist said. 

[00:54:37] Estela Mata: It is. It is tough sometimes, you know, and one thing that I’ve learned is you know, when you get up you could be achy, you could be, your muscles, your, your, your joints could be tight. You might not be able to move. But as soon as I inhale, I remember I could breathe and I can feel my heartbeat and I know I’m [00:55:00] alive and I am grateful every day. So those are the things that I think about. You know, I open my eyes and I’m alive today and anything else that comes today, I will be able to get through.

[00:55:12] Cheryl: I love that. It’s so, so powerful. Totally different note. Do you have a favorite arthritis gadget or tool in your toolbox? 

[00:55:22] Estela Mata: I have to say

[00:55:22] Cheryl: I’m all about the life hack. 

[00:55:23] Estela Mata: I have to go buy all of the gadgets that you’re always talking about. 

[00:55:27] Cheryl: You know, my little loose scissors right here. 

[00:55:30] Estela Mata: I, I love that. I love the gadgets that you always, you know, come up with.

[00:55:33] And, and I love the videos because you’re always so happy and sharing and we shouldn’t feel embarrassed to get special gadgets for our daily needs. I will have, 

[00:55:42] Cheryl: I truly don’t, I don’t know why everyone’s like, how would you become comfortable? I’m like, I have no transformation story. I’d never thought I should be ashamed in the first place, so I don’t know what’s, what my parents did right? Or if I’m just literally the day joke. Well, she’s never had any shame. [00:56:00] 

[00:56:00] Estela Mata: No shame in the game. It’s okay. No shame. No shame in the game. I have to say one thing, so for me you know, growing up in a, in a Mexican household, we squeeze a lot of lemon. So we make a lot of soups, a lot of les, so the lime juice, so lime, I love lime and everything, and my fruit and my soups and my, and everything.

[00:56:19] So lime is my thing. And not being able to squeeze that lime or that lemon, you know has been really difficult. So one of the things that I love is there’s a little gadget that, you know, I think it originated, I don’t even know who created it, but in Mexico, they use it and they squeeze the lemon. So I I, I don’t have it in front of me right now.

[00:56:39] I wasn’t prepared for that one, but literally just you, you cut the lemon and then you put it inside and then it squeezes it out. So it helps you kind of, you know, use the palm or have someone else do it for you. 

[00:56:51] Cheryl: Oh, I can put the link in one. I grew up using those, my parents didn’t have arthritis at the time, or it’s, it’s like there’s a little con, like a cup on the bottom [00:57:00] and then you go like this, you still have to use your wrist.

[00:57:02] Estela Mata: No, not that. 

[00:57:02] Cheryl: Oh, you have the one that actually squeezes it for you.

[00:57:04] Estela Mata: It squeezes it. Yeah. That’s just literally like, just hold it and squeeze. And then another thing that that I, I think, you know, is, is always good is having someone to do it for you. 

[00:57:15] Cheryl: Oh my God, I’m, so, I just said that

[00:57:17] Estela Mata: it’s okay to ask someone to do for you.

[00:57:19] Cheryl: I say that because it’s a really underrated life hack. But like ask for help ’cause I think we often get stubborn because we’re like, the fact that I can’t do it on my own makes me want to do it even more. But just we have to get over that. 

[00:57:34] Estela Mata: Yeah, get over it. It’s okay to ask for help and it’s okay to not be okay.

[00:57:38] So I always ask, so if my husband’s next to me, if my daughters are next to me, my mom, whoever, and you know, I just ask for help. I’m like, I can’t get this, I can’t reach this or there are days where I can’t lift my hand. So like today is one of those days, this is probably as much as I could do and I’ve been stretching a little, like, you know, moving, I see you moving.

[00:57:58] And I have it. We [00:58:00] have to be able to comfort each other and to be able to be okay to to, you know, need that extra help. So ask for help. 

[00:58:07] Cheryl: Yeah, that’s a hundred percent. 

[00:58:08] Estela Mata: That’s the best tool. 

[00:58:09] Cheryl: I had a unrelated to RA, I had a tailbone cyst in 2016 that had to be removed surgically, called a pilonidal cyst.

[00:58:17] And ever since then, I have to kind of shift my shift my position a lot, otherwise my tailbone will start hurting. So that’s why I’m probably fidgety anyway from ADHD too. So I have a lot of things, right. 

[00:58:28] Estela Mata: I know we have all these diagnosis. Yeah, no, but you know, I, I think that those are great tips.

[00:58:33] I love your videos. I’m gonna go watch some more because I’m gonna be purchasing some more items, as, as days go by. There are days that are okay, but there are days that I need a little more help and assistance. So, you know, here’s what it is. 

[00:58:48] Cheryl: Well, and I have a, I’ll put this in the show.

[00:58:50] I actually don’t normally put this in the show notes for whatever reason, but I have a a Cheryl’s favorite products, like part of my website. 

[00:58:57] Estela Mata: Oh, yes. Put it, 

[00:58:58] Cheryl: I, 

[00:58:58] Estela Mata: I remember, I remember [00:59:00] you actually have like links and stuff to a lot of these amazing gadgets and I, I love that because you know, when you’re looking for something you just wanna be able to go to one spot and be like, okay, I may need this, this, this, and that.

[00:59:13] You know, so, and anything that helps and, and we will share it as well. Yeah. But I’m so happy that you had me. 

[00:59:19] Cheryl: I know, me too. I had, I dunno if you have time for one more, but that’s, that’s okay if we don’t, 

[00:59:23] Estela Mata: you can. Ask me 

[00:59:24] Cheryl: I mean, you’ve already answered this without being asked directly, literally, but just ’cause I always end on this question.

[00:59:31] What does it mean to you to live a full life and thrive with rheumatoid arthritis? 

[00:59:39] Estela Mata: Oh my God. A hard one, right? Let me see. That’s a hard one. What does it mean to me? Wow. I mean, I could go in so many ways. It just means that living with a condition doesn’t define who I am. It is just a part of me. It, it does not identify me.

[00:59:58] It is not all of me. [01:00:00] I am way more than my diagnosis and and I could give a lot more despite of my diagnosis, and I can do a lot despite of my diagnosis and I can continue to thrive despite of my diagnosis 

[01:00:16] Cheryl: I mic drop. Oh, let me get my Taylor Swift microphone laughing. I just have this on my desk as inspiration.

[01:00:25] I actually have it with my little, with my little human hand. 

[01:00:29] Speaker 3: Yes. And my little, 

[01:00:30] Cheryl: which I, I’ve dropped and I’ve broke the thumb off. But anyway, so I have my Taylor Swift mic with those, this is, this is prompting you all to watch the YouTube version of the the videos so you can see what I’m holding up here.

[01:00:42] Estela Mata: Sure. I love it. Okay. And this is another thing, laughter. 

[01:00:46] Cheryl: Yes. 

[01:00:47] Estela Mata: And friendships are the best thing. You know, once you befriend me, you cannot get rid of me but laughter and the fact that we closed with that mic drop, that mic [01:01:00] drop is the best because now we can continue our days and hopefully inspire and empower others.

[01:01:06] Watching and learning more about how we continue to thrive despite living with these conditions. 

[01:01:12] Cheryl: I, I love it a hundred percent. And it’s just, I already loved your energy when I got to meet you in person, but because the conferences are so frantic, ’cause there’s so many people coming into the booths in and out that we never had a chance to just sit down and chat one-on-one.

[01:01:26] This has just been so much fun and so meaningful for, for me to be able to hear your story and I’m sure to everyone listening as well. So thank you. Thank you so much. I wanna move to California now. Yes. 

[01:01:39] Estela Mata: Well, and here’s the thing. 

[01:01:40] This just gonna be a teaser. Okay. Because there’s gonna be more, yes, these talks to come because we can have panel discussions about rheumatoid arthritis, advocacy, et cetera, et cetera.

[01:01:51] So this is just the beginning, Cheryl, and I am excited for the future. 

[01:01:56] Cheryl: I’m so excited too. Thank you. I’ll see you in [01:02:00] Chicago at the upcoming rheumatology conference and we’ll yeah, we’ll, we’ll say goodbye just to, to the listeners for now, but stay tuned for more.

[01:02:09] 

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