In 2009, Juana Mata was diagnosed with lupus. One of three very close sisters, nobody in her family had heard of this illness prior to her diagnosis — or knew how to handle her support and treatment. As the family began to research education, resources, and the history of the disease, they began to discover that it was largely misunderstood, and that it needed awareness-raising to fund research for a cure. The sisters began gathering in therapeutic loom knitting circles as they processed their experience. They recognized how supportive this art therapy was in relieving their stress, and wanted to extend this gift to others in their community. In 2011, they founded Looms for Lupus, a non-profit providing resources and awareness to those affected by lupus, fibromyalgia, and other comorbid conditions — with a focus on the needs of minorities and families of color. Working with local, national, and global organizations, Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources. Their aim is to create an environment to reassert a sense of hope during a time of illness, and to empower individuals to take charge of their lives through chronic — and sometimes life-threatening — illness.
Tune in as Estela & Juana share:
- what Juana’s early symptoms of lupus were — and that she was initially diagnosed with rheumatoid arthritis (RA)
- that Juana had to argue with a doctor (who wanted to write her off as anxious) in order to get her diagnosis and be heard — and that by the time she was diagnosed, her life was in peril
- that if Juana had not advocated for herself, she wouldn’t be here today
- how Estela was diagnosed with fibromyalgia, along with her daughter
- why Estela pursues holistic treatment to manage her pain
- the distinct role of “invisibility” in their illness experiences
- their experiences of bias in the healthcare system
- why they created Looms for Lupus, and the importance of providing patient resources in Spanish
- their tips for managing chronic illness with grace
Lauren: All right, guys, thank you so much for joining us today. I am here with a sister duo who are Spoonies making it work together. I've got Estela and Juana Mata. Estela lives with fibromyalgia. And Juana lives with lupus. They are the founders of Looms for Lupus, which is an organization in Los Angeles that brings people from the lupus and fibromyalgia communities together. So, ladies, thank you so much for being on the show today.
Estela and Juana: Thank you for inviting us!
Lauren: Absolutely! This conversation has been a long time coming, because I first heard about you two pretty early on in my advocacy work, and connected with Melissa Talwar at the end of last year -- who's friendly with you, and works with you both -- and it was really great to hear more about you from her. And so ever since then, I've been, like, I need to have them on the show. So I'm so glad it's finally happening!
Estela: Yes, we're so excited to be here. We follow you. You bring together so many different people and so many different perspectives. We just love the variety that you bring to all the Spoonies around.
Lauren: Well, I'm sure you two will both have a very interesting and individual perspective on all this stuff today, too. So let's start from the beginning. Can you talk to us about how and when you first got your diagnoses, and how the two of you have maintained control over your health since then?
Juana: Well, I'll start. Initially, I started having symptoms in 2008. Having many symptoms, hair falling, headaches, fatigue, pain on my joints, hands.
In early 2009, I was diagnosed with rheumatoid arthritis. That was pretty devastating for me.
And a few months after, after going through many changes, the butterfly rash on my face, again the falling out of my hair, and mouth sores … in May, I was diagnosed with lupus after fighting and arguing with a doctor, because I wasn't feeling well. So I went to the hospital. I knew something was wrong. The mouth sores were really bad. So I asked him if he could order blood work to see what was wrong with me because I knew something was not right. After arguing for a few minutes, he finally sends me to get blood work. And of course, my first question was, “Am I gonna get my results today?” And he said, “Yes.” However, when I went down to the laboratory, I was told that I wasn't going to get my results until the following day. I was not very happy about that. So I went back to the doctor's office, which is in the same building. And I asked him, “I know something's wrong with me. I'm not gonna leave until you let me know what is wrong.” Of course, I knew I wasn't going to get the results. So he asked me if I was okay to go back and get a second set of lab work after he diagnosed me with anxiety, because he didn't really like the fact that I was arguing and kept insisting that something was wrong with me, and I wasn't gonna leave without knowing what was wrong with me.
Lauren: Anxiety. That's a great catch-all. Of course, I'm anxious. I'm waiting for a diagnosis and I'm in pain!
Juana: Right. One of the things he did mention to me when I was there, he said, “You look fine. You don't look sick.”
Lauren: The classic story. I love this!
Juana: Yes, I did have my makeup on, my hair was done. And I was wearing heels. But anyway, so I go get the lab work for the second time, come back. Thirty minutes after, I was asked to go into the doctor's office. And so I'm there. And he said that he needed to speak with me; he talks to me, and he tells me, “Well, something is not right.” I said, “So what's wrong with me?” And he said, “Well, your platelets …” Well, I knew a little bit about platelets, because in April, I had gone to a family doctor in Mexico where he had checked my blood work. And my platelets were at 99, which he said, “Follow up with your provider, because that's not normal.” So 99, and I knew something was wrong with me back in April. So I'm here in May with this provider, and he's telling me, “Something's wrong with you. Your platelets are low.” I said, “Okay. That's fine. How low are they?” He tells me, “Well, they’re at 6000.”
Lauren: Okay, so now the numbers aren’t matching at all.
Juana: Yeah, 6. And I was, like, okay, am I going to die? Because the only thing that I can remember is, 99 is low.If they’re at 6, I might die.
Estela: But actually when she says 99, it just classifies it as 99. But it’s 99,000.
Lauren: Gotcha. But either way, this is a significant drop.
Juana: Right. After arguing and fighting with him, and he tells me you're at 6000 or 6, and I said, “Well, am I going to die? What's gonna happen?” he said, “Well, let me check with a specialist, the hematologist.” And long story short, by then I wasn't allowed to get up. I wasn't allowed to move out of my chair until they put me on a wheelchair and sent me to the ER.
Estela: And this is twice she's gone to the lab with her heels walking around — because she was “just anxious”. And now all of a sudden … oh no, you can’t walk anymore. We're bringing the wheelchair to wheel you down. Now we're scared.
Lauren: Yeah. Because this doctor would have written you off with anxiety and possibly sent you home, had you not pushed for these labs.
Estela: Oh, yeah, she was sent home.
Juana: I was sent home. The only reason I had the second lab work done is because I insisted. He did diagnose me with anxiety. And I was also diagnosed with thrombocytopenia. So I was sent to the ER, called my sister. And while we're on the phone back and forth, she arrived and before midnight they had already drawn two more blood samples, where my platelets had more dropping drastically. At 12 o’clock, my platelets were at 2000. Had I gone home, I would not be here talking to you, because my platelets were dropping so fast.
By midnight, I don't think I would have been alive had they not started the treatments.
Lauren: Well, you wouldn't have been alive had you not stood up for yourself. Because this doctor was happy to send you home as an “anxious woman”.
Estela: Because she “looked great”.
Lauren: Yeah. Newsflash, for anyone who's tuning into this show and hasn't figured it out already … you can look great and feel like death! And women are especially good at looking great and feeling like death, because we've been taught to do that since the moment we were born.
Juana: Right. So while I was waiting for one of the ER doctors, my sister was with me and she was actually the one … the doctor comes in, there's a change in doctors, and he tells me that he's gonna let me know what's wrong with me. They were setting me up to to go get a blood transfusion or platelet transfusion. He comes in and he tells me that they're not going to be able to do that, because there is something wrong with me. And even if I get transfusions, that's not going to help me. My sister looked at him, and said, “Does that she mean she has lupus?”
Lauren: So Estela knew?
Estela: I have been working in healthcare for a long time. I'm not a nurse provider or anything like that. But I worked with a lot of specialists. We had hematologists, rheumatologists, dermatologists and all the -ists you can think of. And what I started doing is looking at her symptoms, like the butterfly rash.
Lauren: That’s telltale.
Estela: Yes, and I figured that's what it was. But I was scared, because anytime you Google what you should never Google, the first thing you find is death and no cure. Right? And treatments back then, there were no treatments.
So as soon as I got there, and I asked him, he immediately turned to me and asked me, “Are you a doctor? Are you a nurse? How do you know about this?”
And I said, “Well, let's not focus on me.”
Lauren: Yeah, why are we talking about that right now? Let's talk about how to save my sister.
Estela: I’ll tell you, because of him she was diagnosed, and he was pretty new. The shift had changed. So he was the one that said no transfusion — and diagnosed her with lupus. So she's alive here today, like you said, because she advocated for herself. She got a diagnosis that she fought for, basically. And she's alive here because she refused to go home.
Lauren: Yeah. And it sounds like also, you mentioned that this was like a newer doctor … it sounds like maybe someone a little bit fresher. in the medical field.
Estela: Yes. And he's the one that actually diagnosed her. And I think what what happens is, there's not a lot of focus on these autoimmune conditions, I guess, when they're in school. So when you get someone fresh, I think it's like new perspective. They're looking at, okay, what could this be? And he was amazing,
Lauren: A little more open to these more, at the time, esoteric diagnoses. Which are, of course, so much more common than we realize or give credit to. But really interesting that it also took someone who was younger to be open to your opinions as well, and to be really looking out for you. So what happened at that point, then? You didn't get the transfusion, but you've got the diagnosis. So did they immediately get you on Plaquenil?
Juana: They actually put me on different treatments. IVIG, very high doses of prednisone. I was in ICU for seven days. Within those seven days, they couldn't control my platelets; they would do the IVIG, and they had to constantly do different treatments while I was in the hospital. I was released seven days after, and after that, I did have a hematologist that I was going to on a weekly basis. I was getting blood work done on a weekly basis, because for a whole year, they couldn't control my platelets.
So at least four times I was in ICU, because no treatment was helping me. It was a daily struggle.
And a lot of the times I had the lupus symptoms, yet there was no way for me to check the platelets unless they would check my blood. I was going to get my blood work done every three days, or every seven days. They were trying different treatments. I was on chemotherapy, methotrexate, for two years. And finally they were able to control the platelet count. It would go anywhere from 20 to 30 to 50 to 90. My hematologist that said that if my platelets weren't controlled at one number, and it wasn't fluctuating so much, then 50 was okay for me. However, if they kept fluctuating where they would go to 30, 20, 90, 80, then they would have to do a procedure, which was a splenectomy.
Lauren: Wow. So did you end up having that?
Juana: No, I didn’t. A few months before the scheduled date for this splenectomy, my platelets were stable. They said, if they're stable right now, we're not going to move forward with a splenectomy. However, they still continued to check the platelet count on a weekly basis. And it did remain at one number, no higher than 100.
Lauren: I mean, it's really interesting to me, because also you go from ICU to then spending the next two years being in the doctor's office on a weekly basis, or several daily basis, if you will, getting tested endlessly. That's got to be running your body down while you're in the midst of trying to heal as well, right?
Juana: Yes, I had very, very bad days. But I also had good days where I just felt like, I'm okay. Though I was still going through a lot of pain and fatigue. But I felt that I was able to do it, not only because I was fighting against just feeling down, or fighting with the pain, but also having the family support. Which I think is one of the things that really helped me — my sisters’ support, my mom’s support, my family support — they played a big role in how I was doing and how I was feeling, and how I was leading my daily life.
Lauren: Absolutely. And we're gonna get into that more as well. But it sounds like from that point on, you were able to find the emotional strength to keep on, with the support of your family and friends, and you are now still in a stable place and advocating for others as well. So I'd love for you, Estela, to tell us a little bit about your diagnosis story as well, and catch up with your sister here to find out how you both ended up with diagnoses and advocating for each other.
Estela: So, I have been living with pain for a long time. We have a very high tolerance for pain in our family. Pain every day is okay. But then there are those days where it just gets worse and worse. So I've been living with pain since probably when I was 15 years old. And living with pain for me was, like … okay, we can control this, we can figure this out, we can stretch, we’ll exercise. Then about, I want to say three years ago, symptoms started getting worse, where my fatigue was really, really bad. My hair was falling. Notice the symptoms that I'm going to talk about … So fatigue, my hair was falling, I would get rashes on my face — not a butterfly rash, but rashes on my face. I would be really sensitive where I wouldn't even be able to put a sweater on because it would it would hurt so much. I had very bad headaches. I would get sores in my mouth as well. So of course I thought, oh my gosh, I don't even want to think of the L word, lupus. So I started getting a lot of lab work done. I started tracking my symptoms. Was I sleeping okay? When was it worse, and all that good stuff. Went through a couple of rheumatologists, some that my sister loved which I didn't like — so it's good to try and find your fit. Because she would say, "He is amazing.” And I would say, “I don't like him.” You have to shop around to find your best fit. So, saw a rheumatologist for about two years. Finally, I got a diagnosis of fibromyalgia.
In between all of that, I would go in for migraine; they would tell me, you have migraines. They would tell me, you just need to sleep more. Or, you have myofacial pain. And basically give me pain meds and send me home.
Lauren: Yeah, well, with pain meds, there are lots of people who go in with pain and the doctors are, like, “Here's some Tylenol.”
Estela: But with me, it's the opposite. I don't like to take a lot of controlled substances. Because they are really addictive and it was just going to help me during that time. But what happens when you are in this major pain every day all day, and I need to be able to function and work. We went through a lot of lab work, ruled out that it was lupus. Actually, about two years ago, there was a lab that created a lupus test. So I was tested for that. And they told me there was no way I was going to get lupus. And I said, amazing, I can take any diagnosis at this point. So I was diagnosed with fibromyalgia, which I knew a lot about because a lot of lupus patients do live with fibromyalgia. And unfortunately, my daughter, who is now 18, was diagnosed with fibromyalgia when she was 13.
Lauren: Wow. So this is something you're really familiar with.
Estela: Yeah. So I knew that and I thought, okay, I guess I'll take fibromyalgia over lupus. As if I had a choice, right. There's a lot of similarities with symptoms. So it was a very scary for us, but knowing that at least we could use different treatments that would help. For me, deep tissue massage sometimes helps, cupping, acupuncture.
Lauren: So, holistic methods.
Estela: Yes, a lot of that. I try to go that route. It doesn't work for everyone. We're all different. But it helped me a lot. And I think what helped me … I don't know if your mind helps you but I wanted that to help me so bad, because I didn't want to take the meds. My daughter, also … she tried acupuncture, it doesn't work as well for her. She does a lot of topicals. And that helps. But yeah, it's been a journey for us.
Lauren: You also mentioned before we started the interview that your mom briefly had drug-induced lupus, which was temporary and has since subsided. But the two of you have two very serious diagnoses. It sounds like the fibromyalgia diagnosis for you, Estela, was very recent, like within the last year or two, right?
Estela: Yes. But I’ve had pain since I was 15.
Lauren: Wow. So even though it was long standing, this was a shift in identity in many ways, I imagine. And it's very sweet. I wish everyone could watch me filming this with you guys. Because while you were telling your story, Estela, Juana reached over and tucked something under your shirt sleeve. There's obviously a lot of love and care between the two of you and in your family,
Estela: We’re like best friends, best sisters, we do all of our traveling for advocacy together.
Lauren: That seems to have been true for both of you through your diagnosis journeys, as well. And through your treatment journeys … that you've both shown up for each other. Would you say that having that advocate there, that the advocacy roles that you've both stepped into, not only for yourselves, but for each other, has bonded you even closer than you were before these diagnoses?
Juana: I think we were always very close since we were little. I am the oldest of seven. And I'm six years older than my sister. So since I was very young, I started taking the role as a mom. So I feel very, very close, not only to Estela, but to all my siblings. So yeah, I think we've always been very close. Now with this advocacy and everything that we're doing, it’s not that it has brought us closer, it’s that we're doing and spending more time together. Because we do so much together. Even before we were doing what we're doing, we would call each other every day, morning. At one point when we were young, we actually worked together. Our age difference is six years, yet we still managed and we always wanted to do things together.
Lauren: I think that's just so lovely, seeing that closeness and openness that you two have with each other. Which has also got to be something that really underlines and highlights the work that you do as advocates for other people. You’re showing up as a family to offer services that are for families, and for individuals looking for community and family. We're going to get into it. But I want to know, while we're still talking about your particular illnesses, what a typical day is looking like for each of you, and how you're balancing the demands of work and life as you work around your body's flares and potential symptoms. I'm thinking about, especially Juana, when you were going to the doctor years ago, every couple of days, how are you doing that with work?
Juana: I have been working for LA County for the past 26 years. I have been blessed to have a good supervisor that has supported me. Initially, they did not know my diagnosis, yet I had the support to take the time. And I always managed to … okay, well, I'll take a lunchtime, or I'll go during my lunch. Or where I would go get my lab work, it would be after hours. So I had that flexibility. I've been able to manage my condition, lupus, and my work. I have not stopped working except for the times that I have been hospitalized in ICU.
But I try my best because I feel — and this is something that I felt from the beginning — I feel that if I stop, I'm stopping and erasing everything.
And I'm not ready to do that. I have gone to work in a lot of pain. I do get a lot of assistance at work. The type of work that I do, I have to go and visit clients. So I know that on a hot day, I cannot go because I have sun sensitivity. So I manage to work around that or work at a later time when the sun is down. But I have been able to manage that. And I don't feel that I'm ready to stop now or even before, because I feel that it's kind of like giving up. And I'm not ready to do that.
Lauren: Well, that whole idea that if you stop your trajectory, whether it's in work or otherwise, that there is that element of … all right, I guess we just give up and we stop now. And that's when the body takes over and maybe wins — and we can't let that happen.
Juana: I'm not saying that that works for everyone, and that everyone is gonna think the same. But for me, that's what's helping me just to continue my life. That's what's working for me, because I know that another thing that I don't want to get affected is with mental health. I do have the support. And I think that's what's really helping me a lot. But I know I get sad, depressed if I'm not doing anything. So I keep myself busy all the time.
Lauren: Yeah, and what about you, Estela? How has that looked for you?
Estela: For me, I work and I drive a lot as well. I also have to visit clients. So there were days when it was really hard, because there were days where I couldn't even get in my car without having difficulty. And there were days where I would drive long drives; I'm talking about an hour-and-a-half commute, and sitting down in the same position, and traffic. It was horrible. But I knew that I needed to keep fighting. I'm one of those … we just have to keep moving on. So yeah, it affects me, it has affected me. But now I'm more in control of it. I set my mind to think about other things, just be positive, and that helps me through the day. But there are days where it's harder than others. If I don’t have to travel and if I wasn't feeling well and if I didn't want to drive that far, then I would schedule clients who are closer to me. So kind of working with myself to know what is better for me today, preparing for tomorrow. So the same thing, I think.
Lauren: Would you say a salad that you also have like a supervisor at work — unless you're the one running the show — who you know is very understanding of what you're going through as well and works around you.
Estela: I’ll be honest, as soon as I was diagnosed, I thought it would be best for me to be open and let him know, just in case. He was okay, he was open about it, and I told him, “It doesn't affect me. I’m letting you know not for pity and not for you to be lenient with me. I’m letting you know, because, one, we're in health care. So it's good for you to know that if I'm not feeling today, as well, then that might be it. And also I might need to take time off to go to the doctor and stuff.” That's the only reason I opened up to him. But he was really understanding. He understands what we have to do to take care of ourselves, and it’s not a big deal.
Lauren: That’s wonderful because what I'm hearing from both of you is that there's a combination of really understanding supervision at work, mental health support, and emotional support from family. And also being aware enough of your bodies to be able to sidestep — not necessarily sidestep — but work around what you need for your body within the work day, and what needs to get done. And as well, some of these holistic methods that Estela, you had mentioned earlier — whether it’s, like … okay, we need to go for a deep tissue massage on the weekend, or something like that to keep you going. So you really seem to be very on top of access to all of these treatments. And I'm wondering how you got there. Was that something where, when you both had your diagnoses, you knew, okay, I'm entitled to take care of myself. Where did that self-empowerment come from?
Estela: I think since we were young, my dad, who was always active, he wanted us always to be exercising. He had a soccer team. So we were very involved in being outdoors. That, I think, was a huge motivator. There was no ‘I'm sleeping in today.’ So from that part, with my dad, it was always exercise, move, keep your body moving.
And with my mom's side, the reason we wear makeup and do our hair is because my mom used to always tell us… "If you look good, you will feel good."
It was always her motivation and inspiration to … you get up, and you keep going. If you don't have enough makeup, just curl your eyelashes, put on some lip gloss, put your hair back, and you're good. So we kind of learned from them, I think. And as far as self-care goes, we research a lot. Because in order for us to be able to help others, you need to know yourself, you have to try things out. So we tried a lot of holistic methods; we researched a lot. We didn't just go Google. We would ask providers, we would try things out, and not everything works for everyone. Like I was telling you, acupuncture works for me, it didn't work for my daughter as much as it did for me. And some insurances don't even cover it. So you kind of have to figure out what works for you. But those things, I think … our parents, the way that we were raised … really has made a huge impact on how we live our lives. We're also very open; we talk about how we feel. We talk, if we're not feeling well, so we can support each other. That is one of the key things, that we talk to each other. So if she's not feeling well, I can see it in her eyes. I know when she's lying. She’s, like, “I'm good.” I’m. like, “No, you're not.”
Juana: Yeah, our parents and how we were brought up, and, and then knowing that we just have the support from one another.
Lauren: You have that unbreakable bond of support with one another. So you always have someone who has your back. Which has got to be hugely comforting, and gives you more of a sense of peace in the midst of the chaos of the healthcare system, for example.
Estela: Oh, yes. That’s a whole other thing. It has helped a lot, though, that I was exposed to healthcare since I was like 17. So knowing what an HMO plan is, what a PPO plan is, what an authorization is, has helped a lot.
The good thing is, we have great insurance so we're able to get the care that we need, and get the coverage that we need. So we've been pretty blessed when it comes to that.
Lauren: Having that insider knowledge, I bet makes a huge difference. And we're going to talk about that a little later. But I want to swing back … earlier on in Juana’s story, there was this doctor who wanted to write you off as an hysterical woman, right. And I'm wondering between the two of you, what situations you've been in where you've been confronted and forced to validate the existence of your symptoms or your diagnosis — to people who just couldn't understand it because they couldn't see it. What have those situations looked like? How have they played out for you?
Juana: Well, I know on another occasion … I knew I wasn't right. I wasn't feeling well, I called to make an appointment to see my rheumatologist immediately. It was like, I need to be seen today, right now. I actually called, they said that they didn't have anything available. I went in person. They didn't have anything available. They sent me home. And it got to the point where I said, there's no way I'm going to go through this day without meeting with a doctor. So finally what I did, I went to see my hematologist. And when he saw me walking in … I was in so much pain. It was so hard for me to breathe, because I also have problems with the lungs because of the lupus. So he right away said, “Why haven't you seen your rheumatologist?” And I said, “Well, I've been calling. They don't want to see me. They're saying that they don't have any availability.” And he said, “Oh, no, she's gonna see you right now.” From his office, I walked to the rheumatologist office. And I was pretty bad. I wasn't doing very well. And of course, you know, prednisone went up. And medications changed. I think I've had to fight a few times with doctors because they don't believe, or they don't see that we are really in pain. A lot of times I have high tolerance for pain, so they don't see and they know that I'm working or that I'm walking or I'm driving. I don't know if I'm not showing the pain that I'm going through. But I know that when I'm not okay, I am not okay.
Lauren: You reach your own limit, you have a limit at which it’s, like, okay, I can't fake it anymore. But it sounds like it also makes a difference that you have providers who know you and perhaps have worked with you for a long time. This is a really good tip actually — if you can't get into see one specialist, maybe see another because they might be able to help pivot into getting care for you.
Juana: That doctor was meeting with me on a weekly basis. So he knew that when I told him I'm not okay, he knew I wasn't okay. So right away, from his office, I walked to the rheumatologist — because he knew I wasn't okay.
Lauren: That’s also one of the benefits of having doctors in the same health care system or in the same hospital, right? Because sometimes you can walk from one office to the other if necessary.
Juana: Yes, that’s been a great benefit for us. Like I mentioned earlier, when I had the blood work, the lab was within the same building. So I was able to do that. But not everyone can do that, or has that access.
Lauren: Absolutely. And what about you, Estela? Have you been in situations where you've had to justify the fibro to people?
Estela: Yes. I remember … I won't forget this day.
That was probably one of the days where I could literally say that my pain was the worst ever. I drove myself to the urgent care. And, they were, like, “Oh, you're fine. Your blood pressure is normal.”
And I was, like, “Oh my gosh, I can't believe that you don't believe that I'm in pain.” I couldn't even walk, it was just so hard. I wanted to just cry. And I did end up crying out of frustration, because they probably thought I was drug-seeking. Even though I had not taken any Vicodin, they were prescribed to me in the past. I've had kidney stones. So they always have given me Percocet because of kidney stones. But I don't take the medication, and so they’re, like, “Why are you here?” I’m, like, “This is different. This pain is horrible.” I couldn't breathe. I thought I was having a heart attack as well, because my chest area was hurting, my arms, my shoulders, everything you can think of. The air would hurt me. If you have fibromyalgia or lupus, when I say the air hurts you, you guys know what I mean. The air was hurting me. They literally … after fighting and saying, “I'm in pain, I'm in pain,” the doctor came in. I talked to him, and I literally cried and I said, “I have never had this much pain.” So we're talking a little bit more. I had to explain myself to him. My blood pressure I think at that point was … what they consider normal, was 130 over, I think, 80 or something like that. They’re, like, “Oh, you're still normal.” And I said, “Oh no, wait. Go to my normals, my normals are 90 over 60. I'm a little tricky. But those are my normals.” Knowing your numbers plays a huge role. Once he started looking at that he knew, 90 over 60 … now we're looking at 130. There's something going on, she's not lying. So he started believing me, he immediately gave me a shot of pain medication, and I lay down. I also had a migraine, so they turned off the light. But it took me to fight for him to understand me, and cry, for him to know that I was serious about this. And also explaining all my symptoms, and my vitals and everything to him also helped him understand.
Lauren: That's got to be frustrating, too, though. And this is another good set of tips, right? If you're in an emergency situation with your pain and needing treatment … as many people are considered drug seekers, right, when they walk into an urgent care and need pain medication. It's frustrating that you had to explain yourself to the doctor, when they could have looked at your chart, and that would have been enough if they’d looked at your health history. The fact that they did look when you asked them to, and began to take you seriously is great. But I'm wondering, with situations like this, whether there is a prejudice at play, whether that's gender- or racially-based. Between the two of you, can you see the way that you present yourselves? I mean, you talked earlier, “Oh, we wear makeup, and we do our hair … “ Can you see your circumstances in some of these situations, perhaps being different if you presented differently? Like, if you were white women? Or if you were men walking into these offices? Do you think that there would have been so much of a delay in people taking you seriously?
Estela: Definitely. I think, even though we don't say it, I think there's always some sort of … this is how you should look if you're in pain. I will be honest, that day, I was, like, should I remove my makeup?
Lauren: We hear stories where people are, like, okay, that's the strategy today … today, we're going without the makeup.
Estela: Yeah, let me put my bun up or something. It's unbelievable. I do see it, I do notice it. I think the way we're dressed, the fact that we wear our makeup and we do our hair — that plays a huge role. I think the fact that we're women also does affect that, and the pain. When we're walking in, and we say that we're in pain, we are going to be taken differently. I think there's even statistics that have shown that men actually get their medication or pain medication, and they're treated different than us women.
Lauren: If we look at the opioid crisis itself, the large number of people who are addicted to opioids are actually white people, because a lot of it started in West Virginia, I believe. That was the hotbed where a lot of it started. I hear stories like this from people with many different backgrounds and identities. And knowing that you two are women of color, as well … to me, it has to play a role. You walk into an urgent care and you say that you're in pain, immediately you're considered a drug seeker. Not only because you're women, but also because you're not white people. Even though white people are the problem, right? From what I'm gathering from the stories that I've heard, and also the research that I've done, it seems like this is medical bias in action. And it's multi-faceted because as we said, it's not just about race, it's also about gender. It's about someone and the way that you're walking in, with or without the makeup even, down to those details. Would you say that these inequities in the healthcare system — race, gender or otherwise — are a public health crisis?
Estela: Yes. I will be honest with you, the way we look … whether it's the color of our skin, whether it’s your gender, whatever it is … I think there is a huge bias.
Lauren: Absolutely. Would you agree, too, Juana?
Juana: Yes, definitely.
Lauren: There's lots of nodding here! I'm going to briefly pivot away from healthcare, but I'm going to come back over. I want you guys to talk to us about Looms for Lupus. How did you start your work as advocates for others? I know there's a story behind the name, so talk to us about how this all manifested and how you became advocates yourselves.
Estela: So when my sister was diagnosed with lupus … the things she was talking about, the methotrexate, the chemo pill treatment and how mental health plays a huge role in someone living with a chronic illness. For her, she needed to be active; she couldn't be just at home sitting down, resting. So that is kind of what triggered us to know that we needed to be more active in learning about the illness. Not only learning about the illness, but learning about the treatments and the medications and how they were going to make her feel. Kind of being open about it. So we knew that we needed to understand and learn more.
There wasn't a lot of awareness; there wasn’t a lot of information in Spanish. Which is why we figured we need to advocate also, and we need to raise awareness in Spanish.
And raise awareness in regard to lupus, because a lot of the minority groups are the ones that are impacted with lupus. So, the Black African-American community, Hispanic, Latino, Native American, and Asian Pacific Islanders. We knew that that we needed to do something, because we didn't find a lot of support. So that was number one. And then the loom knitting, which is one of the crafts that she would do at home. We won't talk about it too much in detail because we still need to patent it … but she created a way to loom knit where she wouldn't use her fingers as much.
Lauren: Wow, so it’s safer for the joints.
Estela: Yes, for the joints because of rheumatoid arthritis. We would get together at my mom's house, and she would bring her loom knitting kit. My mom would loom knit, and also knit. In Mexico, they do a lot of knitting, so my mom knows how to knit all kinds of creative things. And my sister-in-law. So we would always get together, and we thought, oh my gosh, we need to do this and bring other families. So that's where Looms for Lupus came about, which is loom knitting for lupus, and then we wanted to knit a community of hope. We wanted to bring hope to others There are five Mata sisters. One of our younger sisters is in law enforcement. She's a police officer. She was a community liaison, and she found out that there was going to be a lupus walk. So she’s, like, “Oh, my gosh, we need to do this.” This is like five months into the diagnosis. And so we wanted to get together. We did a lupus walk. And we thought, hey, we need to have a logo, we need to have a team. So my younger sister was the one that created the logo with a butterfly, and the ‘Looms for Lupus’. We figured, we're doing this for ourselves, we need someone to support my mom, someone to support the family, and someone to support those that are living with this condition.
Juana: And the children as well, because I know that for me, I had my two sons that were very young, so I knew that they needed to learn and know that there was support within our family, and to show them that there was support out there. So that was one of the reasons that we started.
Lauren: I love that because it's making me think also, Estela, about your daughter living with fibromyalgia. Being born into a family of advocates must make that whole journey a lot more palatable and sort of manageable from a certain perspective, too.
Estela: Yes. It can be overwhelming. We'll get back to that, because I do have something amazing to tell you about the advocacy work. And my daughter’s and her son's role in all this. So when we started creating this, we said, not everyone's going to loom knit. Not everyone knows how to do this; not everybody's going to want to do this. So we decided to bring in different crafts. We knew that keeping our minds busy and getting together in a circle was not going to be for everyone, and not everyone wanted to loom knit. So we created workshops. During our support groups, not only did we invite caregivers, loved ones, kids as well, it was for the whole family, and it was a time to get together to talk about lupus, learn about lupus — and craft together. So we do vision boards, we create little key chains. We do a lot of art therapy, mandala coloring; we do it all. Of course, right now with COVID it’s been hard. But those were the things that we wanted to focus on, creating arts and crafts, and through that, having a community where people could bring their kids, their loved ones, their supporters, and for those that didn't have the support system — because not everyone does. They would come alone and they would have a mother figure or a father figure, and children as well. So, it was really fun. There's actually a picture of our first support group; we didn't have anybody, no one came besides our family.
Lauren: And that's someone, that's something!
Estela: And my sister was showing my daughter how to loom knit and my daughter was probably 5 years old … it’s been like 11 years, so 6 or 7. … We were at a lupus walk two years ago, and I took the same picture, and I posted it. And I thought, oh, my gosh, these girls grew up knowing and learning about all of this. Which helped my daughter a lot when she was diagnosed with fibromyalgia at the age of 13.
Talking about your symptoms, and talking about how you're feeling, is not something that a lot of 13-year-olds do. And for her to be able to do that, and bring it up to us, was huge.
Also the mental health aspect of it … you’re going through the hormones …
Lauren: What a time that is.
Estela: What a time to get hit with this, and living with migraines as well. So I think it helped her communicate and also helped her learn how to track her symptoms — which brought her a diagnosis sooner than I did.
Lauren: Just amazing. Everything that you guys do is so impressive to me. And what I love is that there's such a focus on community. Because I think a lot of people outside the chronic illness community don't necessarily realize how important these communities are to those of us who are within the Spoonie community, how much we find that we really need to lean on one another and talk about our feelings and learn. We’re all hungry to learn more about what we're going through, what our friends are going through. So that you're creating this community based through activities, through keeping the mind and the body active. I mean, it doesn't get much better than that.
Estela: I know, right. And all these things, they’re therapeutic. You hear about art therapy a lot. But 10 years ago, when we were doing the support group … I think a lot of people think of a support group, and that's what I kind of thought, too, the AA groups … you know, “Hi, my name is …” and we didn't want to do that. We didn't want people to think that's what it was about. And so we were, like, we need to create something different. So that is what has made us unique throughout this whole time, that we've always had that. And now when you hear about mindfulness and meditation, we kind of learned these breathing techniques — which helped me a lot with anxiety. When we were there, we would start off the day with a five-minute, “This is how you do a deep breath. This is what mindfulness is. You focus on this, you touch this.” It's been really, really amazing to be able to teach that to the kids and to everyone that goes there.
Juana: And it was so interesting that, not too long ago, maybe last month, during a support group via Zoom, one of the ladies shared that she had been diagnosed with lupus for the past 10 years, and she had never attended a support group because she felt … why am I going to attend a support group? It's going to be so depressing. I'm going to get to hear people with all their problems or all their pains. And before the session ended, she thanked us and said that she was so happy that it wasn't what she thought. She said she was gonna continue to join our support groups, because it was something completely different than what she thought it was gonna be like. So our support groups are not always depressing. We do try to make it as fun as we can. And we do different crafts, like Estela said, so that we can not only focus on the negatives — because there's a lot of negatives with our conditions — but we try to focus on the positive. And when we do go out within the community, we do a lot of positive affirmations. I
Lauren: So you're really sharing mental health, coping techniques as well, with this mindfulness stuff. I love it because LA is such a place for mindfulness and meditation stuff, but it's true!
Estela: It wasn’t something you talked about years ago. Right now you hear about it more, which is great, because we're all learning these things that help us. But going back to why this is good and why it's good to have kids involved in all of these activity and talking to them … one, it helped my daughter get her diagnosis a lot sooner. Two, she knows how to advocate for herself. If she was going into a room with her five physicians … because that's one of the things that I was so blessed with — she had a physical therapist, a psychologist, a psychiatrist, she had her social worker, the pain medicine, everyone was in the one room together. I think she was going to be 17 … she was able to go in there by herself.
She was confident enough to be able to let them know how she was feeling, how she was doing, what her symptoms had been like, if something helped her, if something didn't.
Lauren: Gosh, that’s amazing. I'm 37 and I still bring my mother to appointments! That's pretty amazing.
Estela: It’s good support, though. And now, because of our friend Melissa, we did the first Fibromyalgia Advocacy Day here, in 2019. My daughter, it was her first time. So she went in and she was 17 then, and my other daughter who was 21 went along with her. So kind of like a sister duo. And she was able to share her story with legislators, so that was pretty amazing. And in March this year, we went for the second time, and this time around, I didn't even go in with her. She went on her own with my sister and her sister.
Lauren: Oh, that's just so incredible.
Estela: Yes. It's pretty amazing to see. At first I thought, oh my God … I was the one that was nervous! How was she going to do? Here Congresswoman, she's gonna meet with her. How is she going to do? And she was amazing, right?
Juana: Yeah, definitely. She did great. I was with her. I told her, “You do the talking.” She did all the talking! And of course the legislators would ask her questions, and she was very comfortable responding.
Lauren: Wow. So what kind of legislation changes are you two trying to work toward with Support Fibromyalgia and other organizations?
Estela: So, we have gone to DC for a couple of reasons. We've gone for lupus advocacy; we go with Alliance for Lupus Research every year. Not only do we raise awareness, but we also want to increase funds for the NIH for research. And also for the Department of Defense for lupus; they now have a category for that.
Lauren: The Department of Defense?
Estela: Yeah, Department of Defense for lupus. My sister actually has spoken and shared her story as a lupus patient. And I've gone in to share my story as a caregiver and a loved one. We have been able to do that now for three years. And then for fibromyalgia, what we're trying to do is … I'm not sure if you're aware of this, fibromyalgia, it's not even categorized the same as what the NIH has. I mean, everyone …
Lauren: Everyone has a different categorization.
Estela: So we're trying to get some sort of classification to be standardized. And then we also want, of course, more funding and research for fibromyalgia.
Lauren: Talk to me about this Department of Defense thing, because I'm a little confused as to why the Department of Defense needs to have a chronic illness focus. Can you help me?
Estela: They actually do research. If you search, they have a whole classification of different conditions. They didn't have a lupus condition until 2017. And that was the first time we went to DC. We have been able to increase that for every time we've gone. So that's been pretty amazing.
Lauren: So your work is already making dividends, in the sense that you're creating change in the moment, as we speak. I mean, you're doin’ it.
Estela: And the movers and the shakers are, to me, these national organizations like the Alliance for Lupus Research, the Lupus Foundation of America … they're the ones that organize all of this. But the stories that come in with these advocates is really what changes everything.
You'll see this on a video that I just created, about why your story matters. It makes change. And it matters because it's about you.
Lauren: We just need legislators to listen to my podcast, to hear some of these stories, right? It's like unreal, the stories I hear. Cool, so put some money into changing medical bias, put some money into this illness, put some money into that pain medication.
Estela: I wish it was that easy! What we usually do is, you find out what's really going on, and what's going to impact the community. There's a lot of bills that are going out. So you research it, and then you go speak to your local legislators about … do you want them to support it, and why you want them to support it, and how it would impact your life and those living with those conditions. So that's really what speaking to these legislators is about. We don't obviously write all the bills, we just go in and support them and we talk about them.
Lauren: Part of that is also a lesson to others who are tuning in, that you can be engaged civically … you just have to do the research, right? Do the research and show up.
Estela: Yes, do the research, show up — and you don't have to go to Washington DC to be heard. You could do it from your living room, from your couch, from your bed. You can send an email to your legislator. We usually ask for proclamations; that's one way to raise awareness. We get proclamations from our local city mayor, declaring, like, May for Lupus Awareness Month. We’re now asking for Fibromyalgia Awareness Month for the month of May as well, and for mental health. Those are the three things we obviously advocate for. There's just so many overlapping conditions, so it's kind of hard to mention them all. But we welcome everyone with any chronic condition, overlapping condition, to join us. Because we know that support is needed, regardless of what condition you have. We know that your loved ones need the support. We know that you need to learn from others, and share your story. Basically that's why we've been able to continue to do this, and obviously collaborating with other organizations.
Lauren: Did you think that you would be getting into the political side of things when you started this support group?
Estela: No, and I love it!
Not in a million years had I thought that I would be so involved with the community that we are — because of a diagnosis.
I have said a few times already that I am not happy that I have lupus, but I am so grateful, in a way, that because of lupus, I have been making a difference. I have met so many people. I have been doing things that I would have never done.
Lauren: It’s contributed to your legacy, really, to have this diagnosis.
Estela: And speaking of legacy, and she hates when I say this … but she was Woman of the Year for District 48. We were able to fly to Sacramento, and she got an award.
Lauren: That’s amazing!
Estela: And with the Women’s Caucus, her name will forever be there. When we walked into the rotunda, her name was there. We were in tears.
Juana: I don't think that we'd realized the impact and everything that we're doing; it’s just incredible. She deserves it. She definitely deserves it.
Lauren: This is the nominating panel over here … heads up… Estela’s turn is next!
Juana: Right, right, because she does so much. She is not only supporting lupus patients and caregivers, but she does a lot. I mean, it's incredible. My sister Estela is very knowledgeable. I mean, she is great.
Lauren: Estela is shaking her head, like … come on now!
Juana: She does amazing work.
Lauren: It's really incredible that you've been able to have these opportunities, because you've made them, because you've been outspoken, but also, that you've been able to partner with these other organizations. Which is so much about how this community becomes even more tightly knit … forgive the pun here with the looms a minute! But we all need to work together more. And if we're aware of one illness, we need to become aware of the co-morbidities. But how people can also make a difference from a local level — and it can gain traction and size, that kind of commitment over time.
Estela: Exactly. And I think, like you were talking about right now, you learn about other conditions, and all these co-morbidities, and everything else that comes with it. We have learned so much and met so many people, and there's one thing in common in all of this — empathy. You learn, you then put yourself in that situation, and you try to support as much as you can.
And I think that’s, across the board, what we need in our community — just to be a little more empathetic with each other and learn how to communicate with each other and support one another.
And I think once we do that, we'll be breaking a lot of walls down.
Lauren: You guys are making me very proud to be an Angeleno right now! I want to briefly swing back to the healthcare system before we move into some fun Top Three lists. Given the experiences that you've both … and Estela, I know you work in the healthcare system, too. What are the pros and cons of our US healthcare system as it is. Are there upsides and downsides to your experiences?
Estela: For me, it's been good … and I think we share the same thing, because we have the same similar plan programs. Having electronic health records, having the providers share that electronic health record, having them share the labs, the console reports from other providers, helps tremendously. Being able to go from one specialist to another right after a direct referral without having to wait for an authorization has been super helpful. My sister is alive today because she was able to be transferred from regular urgent care to emergency room to ICU within minutes. So we've been blessed in that aspect. Now, we have seen the other side of it, as well, where our other family members have an HMO through different plants, and they have to wait for an authorization, and they need to have a specific diagnosis for that authorization. It then needs to go to utilization review and management review to then get approved. Then your doctor has to try and follow up if they have time.
Lauren: And if they remember.
Estela: And if they remember and get back to you to see if it was denied or approved. And if it was denied, to know what process you have to go through all of this.
Lauren: And by then you could be declining in health the whole time.
Estela: Exactly, or dying. And so we see it a lot, just among our family members. Also, besides the HMO, if you're lucky, you're in an HMO program so you at least have coverage, right? We've also seen … where you have the regular MediCal coverage, but not every specialist takes straight MediCal. And even though, yes, you can be seen anywhere, not everyone takes your type of insurance. Or if they do, the waiting period is three to six months. So then you have those hurdles to battle. And then having different doctors and different providers, to go from one place to the other. If you don't keep track of your chart, if you don't keep copies of your labs, then everything gets lost in translation. If that doctor closes their office, you don't have their medical records anymore. We've seen it all. So one of the things that we also, during our support group, teach everyone, and we incorporate is patient empowerment. My sister's alive today because she used her voice. Because she said, there is something wrong with me, these are my symptoms, this is how I feel and I'm not leaving. So that is huge. Taking control of your … I want to say your illness, but even if you're healthy … taking control of your well being. Keeping track of your medical records, asking for copies when you go to a specialist; if they're not under the same electronic medical record system, you get copies of your consult when you leave. You get copies of your lab report when you leave. Because your lab reports are different than what the doctor writes on their consult. You also need to know your number. You talked about her platelets at 99 going down to 2 …
Lauren: And her blood pressure.
Estela: Yeah, her blood pressure. I mean, these are all different numbers and when that plays a huge role in how you're feeling and also if you're going to live or die … you kind of need to know that. So we've seen it all. We've also seen patients that have great medical care, that need mental health or a therapist. But because they don't have that diagnosis, they don't get coverage so they don't get help. And you can appeal that.
Lauren: People fall through the cracks.
Estela: Yes! We have seen a lot of those. The good thing is, again, working with other organizations. We work with a Kaiser Permanente educational outreach program where we actually have a licensed clinical therapist chime in in our support group, so she'll give us tips and stuff. I say she because she's the person that helps us, who was assigned to us. Her name is Ruth Padilla King, and she has given therapy one-on-one for free for those people that have come to our support group that are not able to get the mental health assistance that they need, because they lack the diagnosis. That's not the case for everyone, with every support group, but because of the collaboration and the work that we do with others, we're able to provide that.
Lauren: That’s amazing.
Estela: Yeah. You see all these cracks. And I know I went into detail, but I wanted to show you how it's not just about having medical care, it's about also having control of your medical care.
Lauren: And also, it seems, connecting with some of these providers who may have an openness and a willingness to really want to help people, and will do that outside of the system if necessary.
Estela: Yes, definitely.
Lauren: So let's get into some fun Top Three lists here. I don't know whether you guys want to split them up, or each do three … we can feel it out. But I want to know what your Top Three Tips are for someone who suspects something's off. Maybe they're like Juana was before she went in and stood her ground about her health. What are your Top Three pieces of advice for people who are living that Spooning life, living with invisible illness?
Juana: Well, one of the first things that we always talk about is, knowing your numbers. Keeping track of your symptoms — a little notebook or notepad, just keeping track of your symptoms.
Lauren: And it sounds like mental health might be on that list, too.
Juana: Yeah. Just know your numbers, tracking your symptoms. And having somebody that you can go to for support.
Lauren: I think that's very comprehensive. I mean, this has come up quite a few times in this interview. And those are very clear tips that I'm taking away for sure.
Estela: And knowing, when you're tracking your symptoms, when we talk about your daily life … did something trigger for your headache to be worse today? Did you not sleep last night as well? So, tracking all of that … sometimes people say, I don't like to journal. I don’t like to journal, but I do like to keep track of what I'm feeling or if I'm getting a new symptom.
Is it because I took something? Is it due to flaring? So, knowing what triggers your aches and pains.
Juana: And paying attention to what you're going through. For example, if I go out into the sun, I know that tonight I'm not going to be able to move. Knowing what's triggering certain conditions, certain pains, and avoiding that. You’re still going to be able to go out. But what do I need to do to protect myself so that I don't go through the pains that I'm gonna be facing if I don't cover myself. So for me, I am very sensitive to the sun, so I make sure that I when I do go out and if there is sun, that I use protective clothing; extra sunblock or whatever is going to help me with what I still need to do.
Estela: Tip one is, know your body. Then, know your numbers. And also advocating for yourself.
Lauren: Journal it.
Estela: Write it down.
Lauren: What about Three Things that you'll both turn to when you need a moment of joy, things that you're unwilling to compromise on? Maybe it is the sun and the sun is sort of tough to deal with, but maybe you need to get a little dose of it now and then. What are Top Three guilty pleasures or indulgences or even comfort activities when you're having a flare, three things that you to turn to light yourselves up.
Estela: You know, it's so interesting, because faith for us has been a huge, huge change and shift.
When she first was diagnosed, we had to turn to something, and we turned to faith.
So for us, attending service — which we are lacking right now — was huge, and it has played a huge role. So that, I think, was comforting. We knew that if we go to service on Sundays, and we go together, that that would help us. So that would be bring me joy all the time.
Juana: And maybe something that you like doing. I like exercising. I like focusing on exercise, focusing on what makes me feel good. Sometimes I can't do the same exercise every day, I have to modify. But I do it. That's what keeps my mind focused on something other than the pain. Self-care. I love to do different masks for my face. And I don't go buy them; I make them from whatever I have at home.
Lauren: Ooh, you’ve got to do one of your meeting around making your own homemade masks!
Juana: We actually did. We do try to do bring different things. I like to make my own moisturizers. I do my hair masks. I do a lot of things for self-care, so that I don't focus so much on the negative. I like to take care of myself. I do my own nails, my own pedicures.
Lauren: Well, you all look good. So you're doing a good job!
Juana: That’s one thing that I love to do, self-care. And I do love to take care of my face.
Lauren: You both have beautiful skin.
Juana: Thank you.
Estela: I don’t do as much as she does, but for sure, self-care. I think calling, that’s what brings me joy — calling my loved one. So calling her, calling my mom, our siblings, our good friends. Self-care, exercise. Exercise for me … not so much.
Lauren: I know. It's a tough one. I’m with you on that one, Estela. But I have to say I'm slowly changing. I think all of the quietude of the pandemic has made me go, gosh, I really need to get out.
What brings us joy is definitely family, talking on the phone, and self-care activities, and faith.
Lauren: I love that. What is your ask for listeners tuning into this episode today? What can they do to support you and the Looms for Lupus community in your continuing work?
Estela: You know, I I'm very bad at asking.
Lauren: This is why I'm telling you. Now you ask … this is your ask space!
Estela: As far as asks for Looms for Lupus, I would love for people to connect with others to reach out for support. We have great support groups, we partner with a lot of organizations.
Lauren: Where can everyone find you?
Estela: So I ask everyone to please tune in to our Facebook Live. We do support groups in Spanish every second Saturday of the month through Facebook. We actually have a bilingual support group where we do all of this at in-person workshops, which we can't right now, but every second Saturday of the month in Baldwin Park. Right now we are doing everything through Zoom, so everyone can join. And we have a new series with a Community Connect Live with Melissa Talwar from Support Fibro and we love requests. It's every Friday at 9:30 and we're streaming through Twitter, Facebook, and YouTube. So we are going to be live every Friday, bringing all the support to the community.
Lauren: And that's 9:30am.
Estela: Yes, 9:30am Pacific Time.
Lauren: And where can they find you on social media and on the internet?
Estela: So Facebook, Twitter and Instagram, it's all under @Looms4Lupus. But also they can find us, our personal pages, under Juana Mata and Estela Mata. But we do mostly everything through @Looms4Lupus.
Lauren: And what's next in your advocacy journeys as well as your wellness journeys, your personal wellness stories. What's next for both of you?
Juana: There are a few things that we're doing. The support group -- that's one thing that we do once a month and now with Support Fibro with Melissa. And what else are we doing?
Estela: We do have a wellness day coming up next year. We originally had it planned for this year. It's going to be a wellness day, it's going to be free for 150 people living with lupus, fibromyalgia, and their loved ones. What we're going to be doing is different workshops of everything that we incorporate into regular self-care — whether it's mindfulness, meditation, art therapy. And we have special speakers. we have a rheumatologist, we are going to have a researcher. And we're going to have also our Congresswoman, they're attending. We had to reschedule twice this year, because of COVID. We had it originally for May, then moved into September. Obviously, we can't do it now. So we're going to be moving it to May of next year. So that's coming up. But every second Saturday, we have the support groups live and on social media. We do pop on Instagram Live every now and then to give all these updates. So that's really what we have coming up next. We are very involved with research. There's a lot that we're doing. When it comes to mental health, we’re very supportive of the mental health community.
We're part of the Mental Health Consortium with our Congresswoman. So any bills that come out, we try and push and we educate everyone.
We're also working together with fibromyalgia, so any fibromyalgia advocacy, we're going to be doing that as well. So just a little bit of everything here, there. We don't have anything set in stone, as far as what we have scheduled.
Lauren: No, but you're both fairly prolific. You are doing so much. You're hosting community calls, you are hosting them in English and in Spanish, you are organizing events, you are organizing legislative change, educating, connecting people. I think this is incredible. And we have to be so grateful in this moment that you guys are here for us in this community. And I'm so grateful to have had time to spend with you both today, because, man, have you both got incredible stories. But also you are doing incredible things for the community. And I'm just so honored to have had you on the show.
Estela: Thank you. I know you do it as well.You’re helping so many people by just giving them information. There's so many people that don't have a lot of support, that don't have a family like us, that don't have a good sister like I do, sisters. They need to look up to something and your podcast is helping a lot of people. You're doing amazing things. So it's our pleasure to be here with you.
Lauren: Well, we’re all helpers together. Finally the three of us have gotten together and can do a little helping spoonful from all three of us at once. A reminder to everyone … you can find Looms for Lupus @Looms4 Lupus on social media, and check out those Instagram Lives. Check out those regular events in English and in Spanish. And thank you again, Juana and Estela, for being on the show today. You are both lights in this community, and we are so so lucky to have you.
Juana and Estela: Thank you.