Sjogren's Strong

Introduction

Lupe Live on Instagram

Lupe was invited to be a Guest on the “Arthritis Dietitians” Instagram Live! Listen here or watch the video on IG.

Lupe Live on Instagram

Lupe was invited to be a Guest on the “Arthritis Dietitians” Instagram Live!

Lupe & Brian: [00:00:00] Welcome to another episode of Sjogren’s  Strong.

[00:00:03] Brian: [00:00:03] This is Brian.

[00:00:04] Lupe: [00:00:04] And this is Lupe.

[00:00:05] Brian: [00:00:05] And this is your podcast discussing how to live an active and healthy lifestyle, despite a diagnosis of Sjogren’s.

[00:00:11] Lupe: [00:00:11] I’m so excited.

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[00:00:12] Brian: [00:00:12] Why? Why are you so excited?

[00:00:15] Lupe: [00:00:15] Because I did my first Live with, The Arthritis Dietician, Cristina Montoya.

[00:00:22] Brian: [00:00:22] Now, when you say live, where were you live?

[00:00:25] Lupe: [00:00:25] Whew! On Instagram, she reached out to me and she wanted to do a little interview via Instagram, go live. I think that’s what it’s called. And I did it. I was a little bit nervous, but I did it. And I’m glad I did because I had a lot of fun. And I think it’s something that I might want to do.

[00:00:50]Brian: [00:00:50] What you’re going to start doing live video?

[00:00:52] I know,

[00:00:52] Lupe: [00:00:52] right. My thing is like, putting myself out there in a video and you’re out there forever, right? But you know what? It was a lot of fun and I’m among friends, so I’m glad I did it.

[00:01:05] Brian: [00:01:05] You know,  it looked like you had a good time. I was in the backyard with you. You know, wanted to hear, and see what was going on.

[00:01:11] Lupe: [00:01:11] And you, you started making faces at me and all these gestures and.

[00:01:18] Brian: [00:01:18] That was funny.

[00:01:19] Lupe: [00:01:19] Yeah, it was funny for a second, but then I lost my train of thought. But it was fun. It was fun. I had a lot of fun.

[00:01:25]Brian: [00:01:25] I just think you’re taking it way too seriously and need to lighten up a little bit.

[00:01:30] Lupe: [00:01:30] So Cristina, The Arthritis Dietician, thank you for reaching out to me. I had a lot of fun and we’ve become really good friends. And I’ve learned a lot from you, not only about foods and recipes, but, um, you have a lot of positivity, that’s contagious, and I love that about you. So, I’m so glad we connected.

[00:01:51] Thank you for having me on. And, uh, for those of you who weren’t able to join us live, if you go to her Instagram, the links will be in the show notes, you can watch it. Or listen to it here.

[00:02:02] Brian: [00:02:02] We hope you enjoy this recording.

[00:02:06] Cristina: [00:02:06] Hello everyone. Now I’m going to invite my guest, there she is.

[00:02:19] Lupe: [00:02:19] I got it. Hi! Sorry I’m late.

[00:02:25] Cristina: [00:02:25] No, that’s okay. I was figuring things out here.

[00:02:30] Lupe: [00:02:30] I thought I was going to get a notification, so I went on your page and I saw that you were alive. So, hi.

[00:02:35] Cristina: [00:02:35] Perfect. Hi. How are you? I’m just going to turn this up a little bit. Yeah. Can you hear me?

[00:02:42] Lupe: [00:02:42] I can. Yes.

[00:02:50] Cristina: [00:02:50] Yeah. So great. Thank you so much for joining me. And I think, uh, I feel like I’ve known you forever, Lupe. I don’t know, there’s just something about us.

[00:03:03]Lupe: [00:03:03] I feel the same way. We clicked. We really did.

[00:03:07]Cristina: [00:03:07] Yeah. So, I’m so happy to have you here. So, let’s get this party started.

[00:03:13] Um, well, I’m Cristina Montoya, I’m the Arthritis Dietician. I’m also a, Sjogren’s Syndrome warrior, for the past 30 years. Yes, I had it when I was a kid.

[00:03:25] Lupe: [00:03:25] Whew.

[00:03:25] Cristina: [00:03:25] A long time ago. I also have Rheumatoid Arthritis and Fibromyalgia, many other things to go on, but I’m really passionate about that nutrition, lifestyle without guilt. Really  guilt, really. I don’t want to feel guilty about anything. And I’m also passionate a little bit about cannabis. You’re going to learn more about me, about that, soon.

[00:03:49] But today, it’s all about Lupe.

[00:03:59] Lupe: [00:03:59] Hi everybody.  I’m so glad to be here,

[00:04:08] Cristina: [00:04:08] Yeah. Hola, Chile. Yay! Whoa!

[00:04:10] Lupe, tell us a little bit about yourself. Where are you from?

[00:04:17]Lupe: [00:04:17] I’m originally from Mexico? Guadalajara, Jalisco.

[00:04:22] Cristina: [00:04:22] Oh!

[00:04:23] Lupe: [00:04:23] Tapatios, Ojos.

[00:04:25] Um, I’ve been here in California since I was two. So, I was basically raised here in California. My Sjogren’s was journey, I was diagnosed in 2008 and, but I feel that I had symptoms way before that. Probably since I was a little girl, because now that I think about it, everything that I feel now, I felt back then.

[00:04:48] But growing pains. Right? That’s what they say. But, um, again, I was diagnosed in 2008 and when I was first diagnosed and they told me, you have Sjogren’s. I’m like what is Sjogren’s? And the first words out of my mouth were, am I going to die?

[00:05:08] Because what is Sjogren’s? I’m never heard of it. And they said, no, you’re not going to die. So, I go home, and I started Googling, Sjogren’s. And there wasn’t much information out there, about 11years ago. And I didn’t find a lot of information back then.  And I didn’t know about the foundation back then either. So, I went to Facebook and I started joining groups, right.

[00:05:36] But I found that a lot of the groups, to me, they weren’t really positive. They were negative and Sjogren’s has taken this and Sjogren’s has taken that from me. And it got me really depressed, to the point where I would cry a lot. And it messes with your mental health. Right? So, a couple of years ago I told Brian, my husband, he’s so supportive.

[00:06:03] Thank you Brian, if you’re watching. I said, you know what? I want to share my story with everybody, to make people feel less alone. And I said, I want to do that via a podcast. So, he helped me set that up. And then we created the Facebook pages and the Instagram pages, and all of that.  And fast forward to now and here we are.  And I’ve met so many wonderful people.

[00:06:29] At first, I didn’t, I didn’t know, I was afraid to share my story. Right. I was afraid to put myself out there, but I’m glad that I did it because I’ve connected with so many wonderful people. Made a lot of really good friends and the community, we support each other so well.

[00:06:50] Cristina: [00:06:50] And, and that’s why I think it attracted me to you. Cause I’ve been on that kind of journey to accept Sjogren’s. I was diagnosed in Columbia, really. And I was like, yeah, you have Sjogren’s and so what?

[00:07:05] Lupe: [00:07:05] That’s it. Go away, right? They don’t tell you anything.

[00:07:09] Cristina: [00:07:09] Nothing. They said, well you have you have rheumatoid arthritis and  that’s more important,  basically that’s really the message. And I still was like, it’s not right. You’re controlling my pain but there are other symptoms that are not being controlled by the therapies that you’re giving me for rheumatoid arthritis.

[00:07:24] So there’s got to be more to this Sjogren’s Syndrome than just a dry eyes and dry mouth. So, and that’s what I wanted to ask you like Lupe, so you said  it took you a long-time t, maybe, figure that out. And so, did it start with dry eyes or dry mouth, how did it start with you?

[00:07:42] Lupe: [00:07:42] Well, how it started with me, I started, I had a cough, a really dry  cough that I have right now, actually. I don’t have it all the time, but it started with dry cough and I would go to the doctor and they would give me cough syrup with coding, right.

[00:08:02] That wasn’t taking it away. I was like, what’s that going to do?  And then my dry eyes got really bad to the point where I felt like I had sand in them. They hurt; they were very sensitive to light. Um, they just felt grainy, like I always had something in them. And I used to wear contacts. I don’t wear contacts anymore, but I think dry eyes worst and then dry cough.

[00:08:29] Um, I felt my skin really dry, nothing, nothing would give me relief for my dry skin. Nothing will give me a relief from anything. And, um, I went to a lot of doctors, right. And you don’t have anything,  it’s Phantom pain, it’s your imagination. That’s how they make you feel, right.  It’s all in your imagination.

[00:08:52] And I went to a doctor ,for my yearly and she was walking out the door and I said, you know what? I’ve been experiencing leg pain, like in my bone. And that’s the only way I could describe it to her. I feel it in my bones. And she’s like, Oh, okay, little tablet, she wrote something.

[00:09:11] They called me a couple of days later and they said, you need to go see a rheumatologist, an  internal medicine doctor. And I’m like, I feel fine, I’m not going to go for six months,  I didn’t call. They called me back and they said, you need to go now. So, she scared me, so I went. The internal medicine doctors, they told me to go to a rheumatologist.

[00:09:35] So luckily, I fell under the care of the most wonderful rheumatologists, I have ever met.  My very first one that, he passed, Dr. Ryba. And, um, he taught me a lot. He told me what to eat, what not to eat. He basically, he taught me everything that I know right now to manage my Sjogren’s.

[00:10:01] So it took several years, but luckily only one hematologist and he was able to help me and I feel, he brought me back to life, basically. So, I’m very thankful for that.

[00:10:12] Cristina: [00:10:12] Wow. That’s powerful words.

[00:10:15] Lupe: [00:10:15] He brought me back to life and not a lot of, a lot of people have reached out to me and said that the doctors, they just, you have Sjogren’s – okay, bye. You know, and that’s it. They don’t tell them anything. So, I try to help as many people as possible.

[00:10:32] Cristina: [00:10:32] I think that’s beautiful.  I actually remember once, when I was working at a hospital, a small hospital and there was this patient and one of the diagnosis was Sjogren’s Syndrome. And I went to say hi to her and she was like, so surprised that she said,  oh my God, you know this? And I was understanding, I changed her diet, like the texture. It was easier for her to eat because she was having difficulty swallowing. Nobody knew anything about Sjogren’s syndrome, there.

[00:10:59] It  was completely, and they thought she was a little kind of  (inaudible) . Oh, she’s being a little bit difficult.

[00:11:05] And so I agree with Hippie Abuela.

[00:11:09] Lupe: [00:11:09] Yes, hi Hippie Abuela. Hi Kristy. Hi Mary.

[00:11:14] Cristina: [00:11:14] So being dismissed, it’s really the worst feeling. Not only that women already, we have that stigma, that apparently, we complain a lot, right. So, we already from the get-go, it’s like, Oh, now she’s going to come and complain.

[00:11:26] Lupe: [00:11:26] She’s already a complainer.

[00:11:29] Cristina: [00:11:29] To get that as stigma, which is really frustrating because then they don’t get to go deeper and to the issue, right? What is, what is causing all this stress and it’s affecting our live.

[00:11:40] Because yes, that’s another thing that I wanted to ask you, Lupe, how has Sjogren’s affected your life? How did that change your life?

[00:11:48] Lupe: [00:11:48] Uh, in so many ways.  Um, from the way that I eat, from what I can eat because a lot of foods, pre my diagnosis, I would choke on and I didn’t know what is that? Am I going to die choking? Because that’s what I thought. Right. I used to feel like I was choking so much.

[00:12:05] Um, but from what I eat to what I do on the daily. Like, you know, a lot of people, if you listen or follow me, my podcast, you know, that I love being outdoors and hiking. And you know, sometimes instead of starting hiking at 8am, we hike at 5am to beat the heat because I have heat intolerance. I can’t take it. It gets me really tired and sleepy and fatigued. And I don’t feel like I have energy to do anything. So, that’s one of the, one of the big ones. But it has affected in so many ways.

[00:12:44] Cristina: [00:12:44] Yeah. Absolutely. I relate to you, especially so, so many years when you just feel so dry. And especially when it comes to food, you know. I know there’s this  way, now , there shouldn’t be any diet culture, shouldn’t be.

[00:12:57] But honestly, when it comes to Sjogren’s, I definitely seen that you do need to modify your diet, right? So, it needs to make it comfortable. And also, is Sjogren is very interesting. And some of the articles that I read from my, my rheumatologists, the one who diagnosed me in Colombia, that’s Dr. Manuel Anaya.

[00:13:16] Lupe: [00:13:16] You still keep in touch with him, don’t you?

[00:13:18] Cristina: [00:13:18] Yeah. He’s awesome. He even sent me a book from Columbia, that he wrote.  And one of the things that he mentioned in his book look it’s that people would Sjogren’, actually add, develops hypersensitivity to foods, over time. Because it’s all interconnected with the digestive system, which we can definitely talk another day about that.

[00:13:39] But I truly believe that there is some way to modify the  nutrition and the lifestyle, it really helps. It helps us to cope with it, right.  Not that is going to cure it, but it helps us to cope with it.

[00:13:53] So, your wonderful husband, I think he dropped in and said how much he loves you. How  has Sjogren’s  affected your husband, life with your husband?

[00:14:09] Lupe: [00:14:09] Well, let’s see, he loves eating potatoes and red meat, bacon and all that. You know what, um, diet has changed a lot. Um, we don’t do a lot of the things that we used to love, like we used to love going to the desert and spending a lot of time at the beach, you know, in the sun. And just in so many ways it has affected him.

[00:14:34] And you know what he’s been so supportive. He changes everything. He helps me so much. Uh, I’m very thankful for him.

[00:14:41] Cristina: [00:14:41] Oh, my goodness. Your eyes are sparkling.

[00:14:44] Lupe: [00:14:44] You know what, a lot of Sjogi’s out there, they’re not so lucky. And I’m thankful for him because he has taken the time to do research and he’s gone to support meetings with me. And so, he understands.  And he takes the time because he cares.

[00:15:04] Not that other husbands don’t care, but I feel like they don’t take the time to, so they don’t understand. They just think, Oh, you’re just being lazy. Get up, start doing this and that, you know. It’s, it’s not being lazy. It’s debilitating fatigue that you don’t have energy to do anything.

[00:15:23] Cristina: [00:15:23] That’s so true.

[00:15:25] Lupe: [00:15:25] Yeah. You know what, let me share something with you. I remember when Brian and I, we were first dating. And we were on the freeway,  on the 405  going to the beach or somewhere. And he was talking to me, talking, talking. And I was like, oh my gosh, stop talking. I don’t have energy to talk. I didn’t have the energy to talk. And I’m like, how is that possible? How people don’t understand how you don’t have the energy to task, but you don’t, right.

[00:15:55] Cristina: [00:15:55] You know, Lupe, that’s so true. And I have done that to my husband so many times.

[00:16:02] Lupe: [00:16:02] It’s like oh my gosh, don’t talk to me. It’s not that I don’t want to talk, but I don’t have energy to respond.

[00:16:10] But changing my diet has helped me so much. And exercising has helped me so much. And a lot of people, they don’t understand. A lot of Sjogi’s they, you’re  too tired to exercise or to walk or to stretch or to do something, right. But stretching out a little bit, starting a little bit at a time, it helps so much with energy. It really does.

[00:16:38] Cristina: [00:16:38] Yeah, absolutely. I think there’s been actually evidence saying that it helps to reduce the inflammation. Right. Gentle moment,  stretching. You don’t have to go overboard, just do  what you can, just move. And I think that’s so important.

[00:16:52] And I, you know, when  we’re talking and I’m with your husband,  I think that’s so important because in 2016, I actually attended the Sjogren’s Foundation’s conference, the patient’s conference with my husband and he attended. And it was like an eyeopener to him. He’s always been supported, regardless. But this was a first time  he actually sat down and heard about Sjogren’s.

[00:17:13] And I think that’s so important, that the people around you really understands, not only that they see as sick, but you know, they understand and they support you and then he cooks for me wonderfully. He loves cooking for me.  And oh, I take it.

[00:17:24] Lupe: [00:17:24] You ‘re lucky. My husband loves cooking for me too.

[00:17:31] Cristina: [00:17:31] Oh, I take it.

[00:17:31]Lupe: [00:17:31] You cook it. I eat it.

[00:17:32] Cristina: [00:17:32] Yes. Why not? So now, I was going thru the podcast, so you told us a little bit about why you created a podcast, right? You wanted to connect with people but a more positive way. Cause I, just like you, I was so depressed and it’s like, is this how it’s going to be like? It can’t be.

[00:17:52]Lupe: [00:17:52] I don’t want to be depressed all the time. I don’t want to concentrate on what I can’t do, right. If I can’t do this today, maybe I can do it tomorrow, with a few lifestyle changes.

[00:18:02] But it’s very important,  you know, when people say, well, I don’t want to go on a diet. Well it’s not a diet, really, it’s a lifestyle change. You have to be consistent with it, in order to feel better.

[00:18:14] But I definitely wanted to put a positive spin on it and it’s not always positive,  right? Sometimes you really have down days. Um, your kind of just isolate yourself from everybody and everything, you know. But, um, on your good days, try to do something good with your good days. You know, whatever it is that you love doing, do that. Whatever it is, reading a book, going for a walk, you know, going to your  friends, whatever it is. Just when you’re feeling good, try to do something positive with it, put a positive spin on it.

[00:18:47] Cristina: [00:18:47] Yeah. And I think  also acknowledging those days that you’re not feeling that well, it’s okay to feel that. Because it is hard to see people like our own age, right. Or maybe even like a little older than us with so much energy. And it’s like, I’m like lying on my couch. And I said, you know what, it’s time for you, let your body rest. Don’t be so hard on yourself. And it took me a long time to learn that. And I think especially when you’re newly diagnosed, when you feel like just like the world, just kind of come down on you and there’s just no way out. Right?

[00:19:22] Lupe: [00:19:22] Right. And I think more importantly, you have to accept it. You have to come to the realization that you’re kind of, after you get a diagnosis and you know, what’s wrong because at the beginning, you don’t know, for years, you’ll have to accept the new you. You know, your limitations, what you’re able to do, what you can’t do. And after you accept it and you come to chance with it, then I think you’ll be okay. You know.

[00:19:50] You can’t do what you used to do, you can’t. So just accept it. And you’ll be ok.

[00:19:59] Cristina: [00:19:59] Accept the new you.

[00:20:00] Lupe: [00:20:00] Yes

[00:20:00] Cristina: [00:20:00] And focus on one you can do and not, and what you cannot do, right?

[00:20:05] Lupe: [00:20:05] Correct. Correct. And do good things with your good days. They’re not all bad. It’s good for your mental health, right? Because it’s important. Mental health is important.

[00:20:18]Cristina: [00:20:18] No. Absolutely

[00:20:19] Lupe: [00:20:19] And mental health is not all bad. A lot of people, it has a stigma, right. But it’s not bad. You just have to come to terms with, with who you are now. And you’ll be okay.

[00:20:33] Cristina: [00:20:33] That’s great. So, I want to acknowledge a little girl, I believe she’s a teenager and I’ve met her at one of the support groups here in London, Ontario.

[00:20:43] And I thought, when I met her and I say like, Oh my God, in a way, I was kind of happy to see, now they’re diagnosing children because they did not diagnose me. Like you took them 13 years to finally come to realize. And they actually realized because I have rheumatoid arthritis and they put all the kind of the puzzle together say, Oh, and you also have Sjogren’s Syndrome.

[00:21:06] But to actually recognize that, uh, you know, a child or a teenager to see, well, you’ll have Sjogren’s. I think we’re moving on the right direction, right. At least to identify, to acknowledge that it’s not, that you’re being lazy because you are teenagers, you’re expected to have all these energies.

[00:21:24] Lupe: [00:21:24] Right.

[00:21:24] Cristina: [00:21:24] And I remember my mom was like, go play with the kids. I said, mama, I can’t, I’d rather read a book. I didn’t understand what what’s going on with me? And I think, I don’t know if I could, at this point, be that kind of supportive of children or parents with children with Sjogren’s because I think it’s just a completely different feeling.

[00:21:46] And so I want to acknowledge this girl, I think she was amazing. And the fact that she calls herself Pediatric Sjogren’s.

[00:21:54] Lupe: [00:21:54] Oh! I’m familiar with her, yes. I haven’t talked to her, but I am familiar with her, we follow each other.

[00:22:05] Cristina: [00:22:05] Yeah! You see, because I thought, you’re doing a great job, Lupe. And that’s why I wanted to talk to you!

[00:22:10] Lupe: [00:22:10] I appreciate it so much. I’ve made so many good friends. You know, a lot of my old friend, they don’t really understand, right. Why I don’t want to do this, or I can’t do this late in the evening. I don’t have energy late in the evening, you know, I’m kind of a morning person, even though in the morning, I wake up stiff like a board and I don’t have energy to do anything, but as the day progresses, I feel better.

[00:22:32] But towards the end of the day, I’m just done. I don’t have energy. And a lot of people don’t understand, well, you just want to hang out with me. No, I do want to hang out with you. I just hang, let’s hang out in the morning, you know. But, uh, yeah

[00:22:45] Cristina: [00:22:45] That’s so true. Like, have you lost friends because of Sjogren’s?

[00:22:49] Lupe: [00:22:49] Yes, actually that’s where I was going, brain fog. I have lost friends because of Sjogren’s. Um, but I feel like maybe they weren’t really my friends, right. Because the friends that I have stuck around, I consider them really true friends. And maybe I have a handful, right.

[00:23:05] But, um, because of that, because of the podcast and you know, this page, um, I have met some really cool  Sjogren’s friends. I’m calling them Sjogren’s friends because that’s how we met, we all have Sjogren’s.  And I mean, I’ve met a lot of wonderful people and made a lot of wonderful connections of friends and we understand each other that’s important.

[00:23:30] Cristina: [00:23:30] And I think that’s what you’ll find that connection. And somehow my page is kind of gearing towards that. A lot of Sjogren’s comes to me and I said, I don’t know, I should, I just got to change the name and just put it like the Sjogren’s Dietician? I don’t know.

[00:23:44] Lupe: [00:23:44] No, because you help everyone people with arthritis, Sjogren’s so many autoimmune, you know. Some people follow me that don’t Sjogren’s. They just have other auto-immune, but there all the autoimmune they’re kind of interconnected, right? We have the same symptoms.

[00:24:04] Cristina: [00:24:04] And I think that’s something that we really need to differentiate, right? Because then some people have the primary Sjogren’s Syndrome, which is the one that appears with no other associated conditions, right,  autoimmune conditions. And it seems like you and I have that, right., because I had it since I was a kid. And then auditors have secondary Sjogren’s Syndrome, which is like, after they have been diagnosed with other autoimmune diseases, which is mostly common with rheumatoid arthritis, Lupus, Scleroderma, kind of all those conditions.

[00:24:33] So it does seem that the primary Sjogren’s Syndrome still appear to be a little bit more severe, right. Cause its kind of, but, but it’s still regardless. I think the impact that it has in your quality of life, if you feel I was.

[00:24:45] Lupe: [00:24:45] I feel like once you’ve had, once you’ve been diagnosed with one autoimmune, more I’m going to follow, right. Cause I’ve met a lot of people that have 5, 8 autoimmune. For me, I was diagnosed with Sjogren’s about 10, 11 years ago. And most recently about a year and a half ago, they told me I had Hashimoto’s. And so now they say, well, now that you’ve been diagnosed with a second autoimmune, Sjogren’s was primary, but now it’s secondary.

[00:25:16] I’m like, what are you talking about? Why is, does it become secondary? You know, why is it secondary Sjogren’s?  But  that’s what they say.

[00:25:24] Cristina: [00:25:24] It’s not going to be. It’s not going to be.

[00:25:28] [00:25:28] Lupe: [00:25:28] When I was diagnosed with Hashimoto’s, it didn’t really impact me. I probably had it for a long time, it was just not diagnosed, I haven’t changed my medication. I still follow my same routine. So, it hasn’t really changed anything for me. So, it’s just the same.

[00:25:44] Cristina: [00:25:44] Hopefully it stays the same.

[00:25:47] Lupe: [00:25:47] I don’t want any more auto immunes because,  I mean, Sjogren’s, Lupus, Arthritis, I mean, I have a form of arthritis too. I haven’t been diagnosed with it, but I feel it, you know. And just more to come and just prepare yourself. I hope not,

[00:26:08] Cristina: [00:26:08] Like you said, like, I will just take one day at a time, right? Like, we really cannot predict the future and then just take the good days, make the best out of them, right. And that keep moving forward the best we can.

[00:26:19] Lupe: [00:26:19] That’s all you can do. That’s all you can do. Yes.

[00:26:22] Cristina: [00:26:22] So a little bit, now I wanted to ask you, how do you explain Sjogren’s to others?

[00:26:29] Lupe: [00:26:29] I say, Sjogren’s is kind of hard to explain, right? Especially people don’t have it, they don’t understand it. So how do you explain it? I say, Sjogren’s in an autoimmune that  attacks your moisture, producing cells, glands, your moisture, producing glands Sorry, I have a highlighter, I talk with my hands. 

[00:26:48] Most of your producing glands, what are they? Um, they produce saliva. They produce tears, sweat, uh, any, it’s everything.

[00:26:59] Brian’s making faces making faces at me over here,  he’s distracting me . But it’s not only dry eyes and dry mouth. It’s joint pain, it’s extreme fatigue. I mean, it’s debilitating fatigue. You don’t, you don’t have energy to do anything.

[00:27:21] It’s brain fog. It affects every part of your life, you know? And that’s, how I explain it. Um, a lot of people don’t understand it.

[00:27:33] My sisters, for example, they don’t really understand it because when they see me, they see me, I’m normal. Nothing’s wrong with me. So, what are you talking about what’s wrong with you?  You’re normal. I don’t see anything wrong.

[00:27:44] But it’s like diabetes, right? People, you don’t see it, but I mean, it’s actually explained, but that’s the best way that I explained to them.

[00:27:55] Cristina: [00:27:55] Yeah. I completely understand. Sometimes when I try to explain it, like, it’s easier to explain this, right, my hands. OH, ok! So, they’re deformed. Oh yeah. You have arthritis. And I will try to explain Sjogren’s, those extra layers are really hard to explain.

[00:28:12] Lupe: [00:28:12] Right.

[00:28:12]Cristina: [00:28:12] But I say, but you know what? You can’t make me sad because I can’t cry.

[00:28:17] Lupe: [00:28:17] Yeah. You know what? The weird thing is that, like, I don’t produce tears, but I can cry when I get emotional. And I know that a lot of Sjogi’s can’t. But they’re like, well, what are you talking about? You don’t produce tears? I’ve seen you cry. Well, can’t cry because I get emotional, they come from the same place, I’m sure. But it’s something else that causes those tears,  right.

[00:28:42] But I wake up with dry eyes. I can’t eat certain foods. Um, sometimes I go to my parents’ house and sorry I can’t eat that. I can’t swallow. They don’t understand that. Oh, you’re just on a diet. No, I’m not just on a diet. I just can’t, I can’t eat it anymore.

[00:28:58] Spicy foods, you know, I can’t tolerate it because you have blisters in your mouth. You have sores in your mouth.

[00:29:06] Cristina: [00:29:06] And I think that’s just so hard to constantly be explaining that, right. That may be sometimes it’s easier just to say, yeah, I’m on a diet. Just leave me alone.

[00:29:18] Lupe: [00:29:18] Exactly. I just don’t want to eat it, you know.

[00:29:21] Cristina: [00:29:21] So just go, just go with it. But it’s true. I think as a teenager, when you can’t explain what’s happening and I think I experienced that. I had a dry cough and my mom was like, stop coughing. I don’t know what I’m coughing. And then I couldn’t swallow. I was always with water, like my mouth is extremely dry and then my mom but you got to eat all the food, I eat the rice, eat the crackers.

[00:29:47] Lupe: [00:29:47] You can’t. You can’t do it.

[00:29:56] Cristina: [00:29:56] Exactly. But yeah, eventually we’re going to talk more about nutrition, right. But today I just wanted to talk about you and you’re going to share your little wisdom here, which you have. I always try like end my little shouts,  I call this like my warriors’ connections, where we really talk as we try to connect with something that we have in common and it’s Sjogren’s, right. And I think we have made connections in spite of Sjogren’s and great connections.

[00:30:32] And so now I would like it to share with, with us, like three tips, like to start Living Sjogren’s Strong.

[00:30:41] Lupe: [00:30:41] The three tips that work for me to live Sjogren’s Strong, I love the name, right. It’s perfect. I think I kind of covered them, but, um, and I meant to do them in order, but sorry.

[00:30:54] So, I think very important, manager expectations, right? Like I said, mentally prepare, you’re a new person. You can’t do the things that you used to do, especially now that you know, what’s causing, whatever it is that you can’t do manage your expectations. That’s number one.

[00:31:15] Number two is diet. Diet is very important, for me. I know a lot of people are different, but for me,  diet is important. I’ve cut out dairy and for the most part meat, but I don’t really meat, red meat. Uh, junk food, processed food, alcohol, sugar, not eating those things has really helped.

[00:31:42] Um, and exercise. Exercise, I think is very important. Um, sounds like it won’t work, but I promise you it will. And you said three, but I’m going to add four.

[00:31:57] Follow the Arthritis Dietician. I’ve learned so much from your recipes. And I am not much of a cook. Okay. I don’t lie about that. But when I see recipes, I’m like, Brian look, and I show him. And that’s how I found you because your recipes are so awesome, and they help you feel better.

[00:32:19] Cristina: [00:32:19] Oh, thank you. I appreciate that. And thank you for those steps. I think that’s so important. Like manage your expectations.

[00:32:27] Lupe: [00:32:27] Yeah.

[00:32:27] Cristina: [00:32:27] Super key. Right?

[00:32:28] Lupe: [00:32:28] It’s important.

[00:32:29] Cristina: [00:32:29] And nutrition, it’s so important just to really become an acknowledge that what you can do and if you cannot do it, that’s okay. You know, that’s okay. You can’t. Don’t beat

[00:32:40] Lupe: [00:32:40] Yeah. Celebrate your small wins. Don’t concentrate on. Oh, I can’t do that. Okay. You can’t do that, but you can do this. You got out of bed; you know. I don’t know you, I don’t know, like a few steps. Maybe you wanted to vacuum. You did that. The small wins celebrate, the small wins, you know, Pat yourself on the back for doing that. Cause maybe a couple of days ago, you weren’t able to do that. So, it’s very important.

[00:33:03] Cristina: [00:33:03] I think that’s amazing. And in terms of nutrition, you know what I am with you in a sense that even though the recipes that I do share, they are recipes that are easy to swallow. You know, they’re easy to make, and they’re easy to swallow. Usually I don’t post that, like a very elaborate, like, let’s say a salad with croutons even if they’re like really fresh because I can’t swallow them. That’s a reality.

[00:33:25] That’s a reality, really of my page when I post recipes, they’re really catered t, like being anti-inflammatory, but at the same time, so soothing for people like us, with Sjogren’s, that can swallow. Cause there’s no point for me to create this, this spectacular recipe and I can’t even eat it.

[00:33:42] Lupe: [00:33:42] Right. And sometimes, you know what? I don’t know if this has affected a lot of people, but taste and smell. I can’t really taste a lot of foods. Um, and smell. I can’t really smell anymore. I love walking in the mornings because I can smell the grass. But other than that, I can’t really smell anymore. You know?

[00:34:06] But I don’t concentrate on that,  I can’t smell. You know, that’s just normal. But I like going because I can smell the grass. Wow. You know. People take that for granted.

[00:34:15] Cristina: [00:34:15] So true. So, so true. And I think that that comes with it. And especially when you’re having that flare up it’s like food just doesn’t taste good. It just doesn’t taste like anything. Is like when you’re having a flu, right?

[00:34:26] Lupe: [00:34:26] Right. It’s like, why do I want to eat it. It doesn’t taste like nothing. I’ll save it for something that you can taste, you know.

[00:34:33] Cristina: [00:34:33] You know, Lupe, I  thought that that was me. I thought that was me.

[00:34:36] Lupe: [00:34:36] No. No. No. No. No. You know, recently, I live right across the street from a park and I’ve been walking in the morning because I walked from home. I work from home now., I’m sorry. And like every two weeks the gardeners are out there cutting the grass. And I’m like, I can smell it. 

[00:34:51] Oh my goodness. I didn’t realize, sometimes you smell certain smells and you  didn’t realize that you haven’t been able to smell it or to taste something for a long time, you know. Sometimes your senses come back. And so, I’m thankful for that.

[00:35:06] Cristina: [00:35:06] And, you know, even when it comes to food, because in Columbia, actually the food is quite  bland, right? So, it’s not really as spicy or delicious as Mexican food. It’s tasty, but it really needs that kind of little spice.

[00:35:19] Lupe: [00:35:19] Yeah. Yeah.

[00:35:19] Cristina: [00:35:19] But then recently I started, even when I posted that recipe on the hot chocolate when it put like a chili pepper. And I was like, Oh my God, it’s just like a party in my mouth. and I said, oh my God, I can taste it. And I taste the flavors. And I think that eventually just the little bit of that. And I sometimes  because it’s still a dry, spicy foods can also kind of affect you, like you don’t tolerate as much, But I think just, just a little bit, it actually helps too. They have some anti-inflammatory effects, those chili peppers.

[00:35:51] And so it’s really interesting cause it’s kind of spice up a little bit, your meals. But  it’s also giving you so much, um, anti-inflammatory properties.

[00:35:59] So, uh, but I’m glad to hear that. I honestly felt that I was just me. And when he comes to exercise, I’m with you, I try as I don’t push myself, I don’t feel like I have to be the perfect, like, figure. I love my Zumba. So, I love it. I think, it’s about that, finding what you enjoy, right. And just go with it.

[00:36:31] Lupe: [00:36:31] You know what, I’m glad you mentioned that don’t push yourself. Do what you’re comfortable with because, um, when I first started walking, um, I was pushing myself too much. I was walking in the morning during my breaks, during my lunch a little bit after work, I was doing like 8- 10 miles, which is way too much. I don’t recommend it.

[00:36:50] But, um, about a week after doing that. I was just really tired, really fatigued. Oh my God. My legs are what is what’s causing that? Hello? You’ve been pushing yourself too much. Don’t push yourself too much. Just the leisurely stroll, get out there and do a little bit, what you can.

[00:37:08] Yeah, because then you don’t want to push yourself too much where you say, Oh, you know, walking or doing this makes me hurt or sore the next day. So, don’t push yourself. Just build up to it a little bit.

[00:37:21] Cristina: [00:37:21] Yeah, that is, that is true. And sometimes you also kind of have to gauge that, is it that pain that is come from the Sjogren’s or is it just like that muscle pain that comes from the exercise. Allow yourself , you know, that, that kind of 24-hour rest, just to kind of identify that it’s really filmed the exercise and then build up a little bit on that. It’s so true. I think that’s so great.

[00:37:42] So, you know,  Lupe, we can talk forever.

[00:37:48] Lupe: [00:37:48] I know, I know, we can.

[00:37:50]Cristina: [00:37:50] I know that you have to go back to that lovely Brian, because Oh my goodness., ay , ay , ay. Amor. Amor. Amor. I am so happy that we had a chance to chat about, Sjogren’s and living with Sjogren’s. Living like Sjogren’s Strong.  And is it Sjogren’s Strong? Or did I say it wrong?

[00:38:16] Lupe: [00:38:16] No. Sjogren’s Strong, yes. I don’t know. I just thought that was a good name because. be strong, you know. Don’t let it, don’t let it bring you down. Sometimes it does, but no, be stronger than it.

[00:38:33] Cristina: [00:38:33] Ah, thank you so much Kris for coming here and then thank you. But I think Lupe, what do you think, should we do one nutrition? I think we should really tackle that nutrition part.

[00:38:46] Lupe: [00:38:46] Let’s do it.

[00:38:46] Cristina: [00:38:46] When it comes to the smell, the taste, like the swallowing, the digestive issues.  I think we are unique. When I compare to other autoimmune conditions, I think, us, with Sjogren’s are a little bit more unique, when it comes to the nutrition and digestion.

[00:39:04] Lupe: [00:39:04] Yes. I agree. And yeah, let’s do it.  And you know what, now that I’ve done my first live, I don’t know, I kind of want to do it on my platform.  I was a little bit nervous cause I’m like, oh my God, people are going to be watching, but you know what? I’m among friends, right. We all understand each other.

[00:39:27] Cristina: [00:39:27] Yeah. And I think that’s what I like to create this space, I love connecting with others and it was so great. So now can we find Lupe, we’re can we find you?

[00:39:39] Lupe: [00:39:39] You can go on sjogrensstrong.com and, find me there. Uh, also I’m on every platform, YouTube, excuse me, YouTube, Instagram, Facebook, Twitter. I have, uh, created a Facebook group, it’s called Living Sjogren’s Strong. And so, if you’re a member, if you follow me on Sjogren’s Strong on Facebook, you can find the group, Living Sjogren’s Strong by going om that page.

[00:40:09] And it’s a wonderful community and we’re just there to help each other. Mostly positive. I mean, some people, they share what they need help with, but that’s what it’s all about, right. So, yes.

[00:40:24] Cristina: [00:40:24] Oh perfect, Lupe and I’m so glad to have you here. So, thank you everyone for participating. If you have any questions, let us know. Um, I will love like also ideas and what things you would like to know so I can blog on or like do so more of these interviews. But thank you so much. And I hope,  I’m going to post the live video. I hope I don’t lose it. But I’m going to post it. So, for future, if anyone wants to kind of see our conversations, then you’re welcome to see us and chat with us and continue the conversation.

[00:40:54] Lupe: [00:40:54] You got it.  I’m excited. Thank you for having me on. I want to say hi to everybody that’s watching live .You know what, I  haven’t  been paying attention to the comments because I didn’t want to get nervous.  I was just looking at you.

[00:41:08] But you know what, everybody here, thank you so much.

[00:41:11] Hippie Abuela, El Sjogren’s Bajo La Cape, Mary. Thank everybody. Thank you!

[00:41:19] Cristina: [00:41:19] Yeah. It’s so good. I  think the comments said, Sjogren’s is the twin sister of Lupus and it’s so true. And I am thanking you so much for the support and we’ll continue  this. And  I think, Lupe, you have given me that inspiration to continue advocating for Sjogren’s.

[00:41:36] Lupe: [00:41:36] That’s what it’s all about.  You know what, a lot of people have reached out and want to do the same. So yes please, whatever we can do to help, we’re here to support each other.

[00:41:44] Cristina: [00:41:44] Oh, thank you so much, Lupe. So, I will post this video, stay tuned and thank you so much.

[00:41:50] Lupe: [00:41:50] Until next time, sip constantly and stay hydrated. That’s how I end it.

[00:42:01] Cristina: [00:42:01] Exactly. Cheers. Bye

[00:42:02] Lupe: [00:42:02] Thank you!

[00:42:03] Cristina: [00:42:03] Bye Lupe.

[00:42:04] Lupe: [00:42:04] We really hope you enjoy that. Again, her links are in the show notes. If you don’t follow her, go follow her because she’s got great recipes and she’s putting out really good content.

[00:42:16] Until next time, sip constantly and stay hydrated.

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