SJOGREN’S NEEDS TO BE YOUR FRIEND

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

Lupe:     My name is Lupe.

Brian:    And this is Brian.

Lupe:     And today we have a guest. I want to introduce you to Lorena. She was recently diagnosed with Sjogren’s and she actually reached out to us via Instagram a couple of days after she was diagnosed, with a with a few questions, so I want to introduce you to Lorena.

Lorena: Hey, hey there guys.

Lupe:     How are you?

Lorena: I feel so glad to be here. I’m so happy. I apologize about my English. If I say something wrong or this isn’t my native language…. Spanish, I’m from Columbia, so I apologize for now. But I’m so happy to be here.

Lupe:     That’s okay. No need to apologize. We appreciate you agreeing to be on the show. So thank you very much.

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Lorena: OK.

Brian:    We’re really excited to have you on this show because being newly diagnosed in a country that we’re not familiar with, we think that there’s an opportunity to learn from each other here, as well, through the diagnosis process.

Lorena: Yeah, for sure. Yeah, I’m excited to tell my story because I mean I feel so young to have Sjogren’s. But you don’t need to be old or young to have Sjogren’s, so I’m excited to tell my story to you guys and help people.

Lupe:     That’s correct. So, when were you diagnosed?

Lorena: I was diagnosed on August, but I felt the symptoms, like one year ago. I started to feel extreme fatigue more than a year ago, like in October of 2018.

Lupe:     Aha.

Lorena: My legs hurt me all the time. It’s like was not tired, it was fatigue. It was fatigue, it was different. And I remember thinking about, oh this is happening to me, I’m 22 or 23 years old. I’m still young. I can’t be tired all the time, but I am. So what? OK. I stop to go out with my friends because I just wanted to be on my bed, resting, sleeping or just laid down on my bed, but I didn’t know anything about it. Honestly. I thought that it was normal because I was getting old, but you know, I was 23 years old.

Lupe:     You’re barely 22. No way you’re old.

Brian:    You’re a baby!

Lorena: Yeah, I know. But I thought that. I was looking for an explanation or a reason for my fatigue.

Lupe:     Your main complaint is… was fatigue?

Lorena: Fatigue. Yeah. I always was in pain. My legs, my legs killed me all the time. Like since I woke up until I went to bed, my leg hurt me.

Lupe:     Your legs like.. like the bone?

Lorena: The bones. I can… my bones hurt me and my muscles. I thought it was part of me. My day… It was normal to me, like being tired or feel my legs like heavy.

Lupe:     Correct. And what about your eyes? Where your eyes dry?

Lorena: Yeah. No, that’s the funny thing is… I have always had dry mouth and I just realized now, because, I mean I don’t know how it feels like to have your mouth moisture, but I now realize I don’t have saliva, now.

Lorena: But until January I didn’t have dry eye’s, before his year. Just dry mouth and another thing, I remember I had, was vaginal dryness. That was really hard. But it was part of me too. I couldn’t do exercise. Ah, so I didn’t have energy to do exercise. But until January of this year I had a Lasik surgery to myopia, I couldn’t see from far away.

Lupe:     Okay. Your eyes.

Lorena: My eyes was good. I mean, I thought they are good. But until January of this year I had a laser surgery.

Lupe:     Laser, aha.

Lorena: Yeah. And it was my breaking point, because oh my God no. That was the worth thing ever. I started to feel dry eyes, until the point I couldn’t spend more than five minutes without eye drops in my eyes.

Lupe:     Aha.

Lorena: And I remember, I remember being so tired. And my boyfriend asking me if this was ever going to stop. And I answered him, I don’t know what is happening. I hope I can find like anything… something or the reason, but I don’t know. But I was blaming to the surgery about this.

Lupe:     Yes, you had laser surgery on your eyes?

Lorena: Yeah, yes, in January of this year.

Lupe:     And that’s when you started… you started feeling the symptoms?

Lorena: I started with dry eyes, after the surgery.

Lupe:     Okay. Okay.

Lorena: Yeah. But I never see… I never saw, like the relation of being tired or being fatigued or painful of dry mouth or vaginal dryness. Anything of this… I never saw the relation. So, I my rheumatologist, he prescribed me different. eye drops every month. Because I went every month. But, uh, on July, six months later, he told me this is not normal. You need to go into a room with a theologist. He thought it was something with ———

Lorena: So I started to look for doctors covered by my health insurance. And found one who has been recommended to me. He ordered blood and urine test. All I knew was that everything except my Vitamin D & B12 levels went well. But she knew that my dry eyes was extreme and he the gland biopsy of my mouth after. And this is when discovered I have Sjogren.

Lorena: So, when I went, he’s office and he read the results, he just told me you have Sjogren’s, your body is attacking yourself, you have to take this medicine for three months for now. But before you have to do these exams of our eyes to make sure they are strong enough to take the medicine. And that’s what it was all. He, uh, he didn’t explain me anything about Sjogren’s. My medical appointment just took 5 minutes of my time, five minutes.

Lupe:     Wow.

Lorena: And of course, I jumped on the internet to read all about Sjogren’s to see image, testimonials and I said oh my God. I’m going to die young. My quality of life is going down… going to the trash. And this is where I found you guys, on the internet and Instagram.

Lupe:     Yay!

Lorena: And we start talking and we started talking. And I found Lupe. And I said oh my God I found a life—— because I felt so alone. I don’t know, anyone with Sjogren’s in my country. And I find you guys. I found Lupe and you gave me a lot of advice. And especially I remember you told me told about food and eating healthy foods.

Lorena: A few days later I found another rheumatologist and he did, he explained me everything about Sjogren’s. He took his time. He ordered Vitamin shot B12 in shots. And Vitamin D, I’m taking currently. And he’s my doctor currently. I have contact with me every month for now. And then I started to research about Sjogren’s on social network and I found that almost immune disease inflames your body and that is what causes pain.

And I remember my friend saying she Lupus and she lives there in music. And he’s called taking a thorough thanks for this book. I was thinking, oh my God, this is kind of impossible or very difficult. But now I’m here. I have my own Instagram, I post all my healthy food. And now I can say I feel so great since I’m eating healthy. I’m doing all the advice that you and Doctor, and I’ve read on the Internet. So, I research every day of the life about anti-inflammatory food, I buy food in the organic market, and that’s it.

Lupe:     Okay. So you, you were diagnosed and then the doctor spent like five minutes with you. That’s it.

Lorena: Yes, 5 minutes, my first doctor.

Lupe:     And then you started looking on the Internet and that’s when you found our Instagram page.

Lorena: Yeah, I found Sjogren’s Strong.

Lupe:     Yay! Sjogren’s Strong. You know what? Um, that’s why we created the page because I’ve had Sjogren’s for 10 years. I was so scared. Just like you. I didn’t know anything about it. The only difference is that I had a good doctor, you know, he explained everything to me.

Lupe:     But um, yeah, I’m glad that we connected. So after I gave you a little bit of advice about the food, because I think it’s probably 80 percent food, when you changed your diet, that’s when you started noticing the difference, of how you felt.

Lorena: Yeah, that’s right. I changed all my dieting. Because I ate sugar everyday if my life. And I ate processed foods, dairy. So now it’s totally different. I feel great. Of course I have to take supplements. I posted my supplements on my Insta. My medicine, I take daily. And I do exercise sometimes. Honestly, I don’t do exercise every day. I still feel tired some days. But I feel really great. My legs are not painful anymore. And I’m becoming kind of a health coaching, like food coaching.

Lupe:     Are you a chef? Do you like cooking or how did you start? You just, um, started doing some research on food for anti-inflammatory?

Lorena: I honestly, I didn’t cook, like every day. But now I do. I have to because, well, my diet. So I start to research about anti-inflammatory food and I start with the basic. With turmeric, with ginger and pepper and organic food. So I started just putting or adding turmeric in all my food. I eat organic eggs and I eat chicken and fish because we need a load of Omega 3.

Lorena: So I add turmeric. That’s how I started. But now I know about vitamins. I know what food has Vitamin A or Vitamin C. Because we need to switch the foods to confuse the cells. So I’m trying to, uh, to get in my breakfast, Vitamin C because we need Vitamin C, especially now, because it’s winter there and here it’s raining time. And supplements. I need to find like the mix of vitamins and minerals, so every food I buy need at all in the would I buy from market, I Google it… the vitamins and minerals they have and I look the recipe on internet and I cook it.

Brian:    I’m asking if you can teach Lupe how to cook?

Lupe:     You know what? You know what? He loves cooking. So I’m not going take that from him.

Lorena: Well, I’m learning to cook—– I didn’t cook before. So I’m trying. It’s just funny. It’s funny because I enjoy it. I enjoyed doing these things. When cook any dish I take a picture, I posted. It’s funny, every morning when I wake up, I drink a green juice. You can add all the greens you have in your fridge with water. And I add my maca powder or ginger powder. It’s a good source of energy, guarana powder. I don’t know if you guys have guarana.

Lorena: Because I think this is one of the advantage, because Columbia, is still… like we have a lot of farmers here. Not like United States because we can, I can find, still like organic, really, really organic food. And I can go to the farmers and get it. I don’t eat Gluten. I don’t eat sugar. I don’t eat dairy. No alcohol, no caffeine and all these food is super easy to find here. Because I know, I mean, I have been in America a lot of times and it too hard. Because all the food has GMO, has Gluten, sugar. It’s kind of hard, like cooking healthy there.

Lupe:     Actually, this morning or yesterday I was looking at your recipes and I remember telling… and yes, they look really good and I remember telling Brian… How can we find the ingredients that you post? I’ve never seen them. I’ve never seen them here in America, so I don’t know. I don’t… I don’t know.

Lorena: Aha, yeah, I know.

Brian:    It might be a little tough, but I’m sure we can find something similar enough to replicate a texture or…

Lupe:     Or maybe we just need to do some research and find out what the English translation is to the ingredients that she’s using.

Lorena: You have Stevia for, like for sugar… for add sweet something. But we have Panela. I don’t if you guys know the Panela. It’s an unrefined sugar, which is healthy. Because we can’t eat refined sugar, so I add Panela ore honey, for example.

Brian:    Yeah, it might be a little tough for us to replicate your recipes completely, but the food does look really good.

Lorena: Yeah, it’s really good. I mean I thought that healthy was like just… it’s always, it’s always green and unsweetened, but no it’s yummy. It’s delicious. Just, I need to read or to read, about. I make a smoothie today, I don’t know if you guys saw on my Insta?

Lupe:     Yes, we did.

Lorena: Yeah. With turmeric, mango, banana and mmm, was delicious.

Lupe:     You know, I started putting turmeric in my shakes.

Lorena: You didn’t use the turmeric?

Lupe:     Somebody told me about it a few weeks ago, I think before I met you. Um, somebody told me about it and so I started adding that to my morning shake I don’t know, it’s hard to say, but I think it helps because it helps with inflammation.

Lorena: Yeah. Ok, all the food I post have anti-inflammatory properties. It’s anti-inflammatory. The ginger, the turmeric, the fish, the almond, maca or every post or every meal I post have… Its anti-inflammatory food. Because I took from anti-inflammatory websites or Insta or Facebook. So, I read before about the ingredients or the characteristics to be anti-inflammatory. So, if it doesn’t… if it’s not anti-inflammatory food, I don’t cook it.

Lupe:     How do you feel ever since you changed your diet, how has that changed the way you feel?

Lorena: Well, I mean, I feel really great because two months or I thing one month and a half, I was tired… tired all the time. All the time. I had under control my eye dry, with eye drops. But I was still fatigued or tired. But now I feel great. I can go out the weekend. This is a very, very important step of my life. I was losing my friends.

Lupe:     Yes. Because you’re too tired to go out with your friends. Correct?

Lorena: Exactly. Exactly. I was too tired, but now, I can go out. I have saliva.. My body is produce tears. That’s amazing because I don’t, I’m not using my eye drops every day. That’s a really, really amazing thing. Because my body’s producing tears since I’m eating well.

Brian:    How long have you been pretty strict diet?

Lorena: It’s about, to be, two months.

Brian:    That’s pretty impressive.

Lorena: I can’t say I’m eating well every day of my life because, I mean, I’d be a liar. But I feel great like, uh, 80 percent of my days, of my week. So, it’s helping me.

Lupe:     That’s awesome.

Lorena: I think the most important change is, I’m producing tears. I’m not using eye drops every day, like before.

Brian:    That’s awesome.

Lorena: Yeah. And, um, I also, uh, I’m practicing on other things… like I meditate. I meditate maybe three days per week. And I’m able to start yoga. Because it’s part of your treatment. You can’t just do exercise, take medicine and eat well. You need to work on yourself. I talk to myself every night and I tell myself, hey you’re healthy. You need to be healthy. You know how to center yourself… How to heal yourself.

Brian:    No, I’m 100 % a firm believer in a positive mindset.

Lorena: Yeah! Yeah, that’s… it’s very, very important to be positive. At the beginning I was in panic. I mean, I was really scared I talked to my family about it. And to my boyfriend, to my friends. Because people at the beginning, they thought I was lazy, just lazy.

Lupe:     Exactly.

Lorena: But I couldn’t explain, it’s not lazy. Because I don’t want to be in bed, but I have to. I now they all support me. With food, with advice, that’s important. The support of your family and friends and couple.

Lupe:     Yeah. I find that people, they don’t really understand it. They think you’re being lazy or you’re making up your symptoms. It’s hard for them to… It’s hard for them to understand what they can see.

Lorena: Really! Yeah, it’s really hard because you look like a normal person. But the fight is inside your body.

Lupe:     Correct.

Lorena: It takes time to explain and them to noticed you have a disease. And this is disease is going to be with you all your life. So, this disease needs to be your friend. It’s going to be with you for your whole life.

Lupe:     Your best friend.

Lorena: Yeah. More than your husband.

Lupe:     Exactly.

Lorena: Yeah. Oh and another important thing is you need to drink a lot of citrus. I try to eat breakfast with lemon, tangerine, orange to get saliva.

Lupe:     Yes.

Lorena: To help to produce saliva. And I add Vitamin C powder. That’s helped me a lot.

Lupe:     What is vitamin C Power? Is it like a powder?

Lorena: Yeah, it’s a powder of Vitamin C.

Lupe:     Do we have that here?

Brian:    I don’t think we’ve ever seen powdered Vitamin C, but she would dig that.

Lorena: So, have been on the for two months now. Are you finding yourself with more energy so you can start incorporating more exercise?

Lorena: Totally, l yeah. I have felt great, even to work to for a whole day. Because in the past I couldn’t be, like on my feet the whole day. I needed to come home and get rest, like from 3:00 PM. I had to leave my office, but now I can be at work the whole day.

Brian:    Our last episode, we had a lady by the name of Diane Sanders on, who is into the essential oils.

Lorena: Oh yeah, I heard it.

Brian:    Oh yeah. The grapefruit. How awesome is that?

Lorena: Grapefruit, yeah, we have. That’s the difference with you guys in the USA, because we still have healthy food.

Lorena: I can eat corn because our corn does not have GMO

Brian:    Yeah. It’s important to eat clean. You know, up here in America we’ve over farmed the land so much that we actually have to add minerals and nutrients into the soil so the plants can grow and provide them, those nutrients and minerals to us.

Lorena: It’s insane. What’s even being I farmed here, doesn’t have a lot of nutrition in it anymore.

Lorena: Yeah, that’s so sad. Columbia is not such an industrialized country, we don’t have, like. a lot of chemicals in our food yet. I say yet, because I know… well the world is changing so in any moment life they are going to add chemicals. But now I know where to go to buy organic -real food.

Lorena: We have public markets and we have aborigines, indigenes they sell the food in the streets. It’s totally, totally natural, without chemicals. So, I always buy my food in these streets or in the public market. And I made sure, if I go to the store, a commercial store, I make sure to read the label. And it says gluten or contains gluten, or soy or corn, I don ‘t buy.

Brian:    Yeah, we started going to Farmers Markets more often, um, to obtain produce and here they pop up on the weekends and they’re there for a day or two. But it’s local farmers, locally grown. Pretty much, you know, fresh that day or if not, you know, the day before. And some the produce is really good.

Lorena: You need to take advantage of these things. I have gone to the markets there – organic markets. Actually, I went to Boston last week and I went to the market to buy food. And, I think, I don’t have trust, now in the food there. But, still, I try and I found some nice food and restaurant of healthy foods.

Brian:    Obviously not fast food restaurants, but there are more and more restaurants popping up that are serving gluten free, vegetarian, vegan menus and we’ve gone to a couple locally. But it’s um, they’re few and far in between. But the food’s really good and it’s really fresh and helps with the diet.

Lorena: I’m jealous because you guys have a sweet potato. Sweet potato is the best food ever… like anti-inflammatory food. And we don’t have sweet potato. We have it but it’s difficult to find it. And there it’s everywhere.

Lupe:     I like sweet potato raw. How do you like to eat it?

Lorena: I cook it, yeah, on the stove.

Lupe:     Oh, okay. Yeah.

Brian:    With olive oil, extra virgin oil.

Brian:    You’re like frying it? A light fry, like a French fry, but sweet potato?

Lorena: Yeah, like a French fry. And the kale, you know, what is kale?

Lupe:     Yes.

Lorena: It’s awesome. If you need to eat it every day, with lemon.

Lupe:     With lemon? You know what I am learning a lot from you.

Lorena: From my posting.

Lupe:     Yes. I didn’t know that sweet potato was an anti-inflammatory because I actually love it. So, alright.

Lorena: Yeah, because it contains Vitamin C. And these vitamins together make anti-inflammatory power.

Lupe:     You did your research after your Sjogren’s diagnosis. You didn’t know anything about the foods that you needed to eat before. Am I correct?

Lorena: Yeah. That’s correct. I didn’t know anything about food.

Brian:    So when are you going to be publishing your cook book?

Lorena: Well, that’s a nice question… I would like to, but I’m still learning.

Brian:    You know, you’re taking really good pictures of awesome looking food and your story behind it. You should list them out with ingredients and cooking instructions and put it together in a book and I’m sure… I mean we would definitely buy it.

Brian:    I’m always struggling.

Lorena: Would you buy my book?

Lupe:     Yes! Yes!

Brian:    I would. I’m always struggling looking for new recipes to cook because… you know, especially like a day like today for example, I’m up early, I work all day, we come home, we’re recording this show and it’s going to be late when we’re done and it’s easy to cook something fast that might not be as healthy or you know, and putting together a recipe. I do enjoy cooking, but I like to take my time and I like to understand the chemistry of what’s happening when you’re cooking.

Lorena: Exactly. You do now after, like after Sjogren’s diagnoses?

Brian:    Oh no. I enjoyed cooking before, but the way I cook and what I cook has changed once Lupe was diagnosed. You know, I was, you know, the meat and potatoes type of American, where potato was my only vegetable for the most part.

Brian:    And now we are cooking with, you know, different ingredients than I’m used to cooking with. And I don’t always make the best tasting food. It’s consumable, but if I’m trying something new and it’s my first time, you know, sometimes it just doesn’t always work out. So having a guide or having a book is cool for me. I typically buy them digitally so I can, you know, scroll through it on my iPad while I’m in the kitchen cooking. Think about doing that because your food does look awesome.

Lorena: Yeah. One thing I heard on Lupe’s podcast is, Lupe, you love ice cream? No?

Lupe:     Yes I do!

Lorena: I love ice cream too and I have found here in my country, ice cream stores without dairy, without sugar, without gluten. So I’m so happy because every time I want an ice cream, I just go to the store and I buy my healthy ice cream.

Lupe:     Does it taste good?

Lorena: Yeah! It us super good. I think with Stevia.

Lupe:     Oh.

Lorena: But you can look for this option in your city, maybe you have. I tried most of them. I found ice cream store that makes the ice cream with coconut milk and Stevia.

Lupe:     Okay. That looks good. I mean that sounds good.

Lorena: Yeah, and we can have coco milk or almond milk, it’s not dairy.

Lupe:     Yes. You know what? I love almond milk. I don’t drink regular milk anymore. We started buying almond milk.

Lorena: Yeah.

Lupe:     I’m going to look into that.

Lorena: Okay. I’m about to learn how to make almond milk by myself.

Lupe:     Whoa!

Lorena: Because I don’t want to buy almond milk in a box anymore. So I am reading about it. So it’s coming to my Insta.

Brian:    Nice. That would be interesting.

Lupe:     Be sure to post it on your Instagram.

Lorena: Okay. Yeah, I will, for sure. I’m trying to. I’m trying not to eat anything from boxes.

Brian:    We do our best to get rid of anything processed, as well. You’re doing a really good job, Shining a Light on Sjogren’s. We love your Instagram feed. We’re going to put a link to it in the show notes here.

Lupe:     It’s Sjogren_Columbia.

@Sjogren_Colombia on Instagram, Profile snapshot

Lorena: Yeah. I’m the only one, I think, from Columbia. Because I don’t know anyone in Columbia with Sjogren’s.

Lupe:     But it was a good idea that you, that you created a page. You know, to educate people. You know, to reach out to people,

Lorena: I’m trying to find people in Columbia because all my followers are from USA, and other countries, Panama, Chile, United States. But I wish I had followers from here. So that’s the purpose with autoimmune disease, not just Sjogren’s. Because Sjogren’s is one of the autoimmune disease. But there is Lupus or Fibromyalgia… so

Brian:    Yeah, because inflammation is the common pain causing part of all autoimmune. So your recipes and what you’re doing is really going to help a lot of people. That’s awesome.

Lorena: Yeah. And it’s an easily recipe. If you buy the right foods, buy the right ingredients and it’s easy to cook. It’s really easy. It’s not, it’s not hard.

Brian:    Please convinced my wife of that.

Lupe:     It’s because, you know what? I don’t really like being in the kitchen cooking. I like him to cook.

Lorena: Well, because you have your husband.

Lupe:     That’s right.

Brian:    Tells me, oh, I’m tired. Can you cook?

Lorena: That’s right. I would do it too.

Lupe:     See.

Lorena: I would say that, this autoimmune disease, change your life, but not in a bad way. And you start to realize, because I feel now I have a purpose in my life, is to help people. I feel so proud of myself, like of my fight against this disease. And so, I went to say to people that this disease is not always bad. It’s not bad.

Lorena: You have to find the purpose on this situation of your life and try to help people. Because you were selected by God or by the thing you believe, because you are different. And that’s important. You need to be more positive. You need to teach your family, your friends that… there are things that I worse in life, like heath on life.

Lupe:     And next time you come to America, be sure to come to California. I’d love to meet you.

Lorena: I was talking with my boyfriend about going to California, because he knows about you guys. About Sjogren’s Strong.

Lupe:     Yes.

Lorena: And about this autoimmune disease and we want to go there. But I’m coming in January, but after January, I will make sure we go to California to meet you guys.

Lupe:     Yes,

Lorena: I admire and I liked how, uh, your husband support you. That’s amazing! I soon as I hear about you were a couple, I texting him (her boyfriend) and I say, oh my God, I admire this couple.

Lupe:     He’s amazing. He has made my life easier and you know, he’s my support. I appreciate him very much.

Lorena: Yeah.

Lorena is a prime example of what SJOGREN’S STRONG is all about. As mentioned in the show she was recently diagnosed and left the doctors office with no information.

She reached out to us in a panic, two days after being diagnosed.  And we talked via private message for hours.

I remember telling her that changing her diet was key to feeling better.

And what did she do? She learned all about anti-inflammatory foods and changed her diet.

She THEN created a page on Instagram called Sjogren_Colombia and is now helping others.

GO LIKE AND FOLLOW HER PAGE

She posts pics of really yummy looking foods. She became a health coach of sorts.

I find myself reaching out to her for recipe tips.

Again, with an attitude of “Sjogren’s needs to be your friend”, she is a great example of what we are trying to do with SJOGREN’S STRONG. I’m glad connected of Instagram and I can honestly say, this is the beginning of a “FOREVER” friendship. #WE ARE STRONGER TOGETHER!

Until next time, SIP CONSTANTLY AND STAY HYDRATED!

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