Nutrition and Living Sjogren’s Strong
Brian: Welcome to another episode of Sjogren’s Strong… my name is Brian.
Lupe: And my name is Lupe.
Brian: And before we get into today’s show, I’d like to ask you Lupe how you feeling today?
Lupe: You know, this week compared to last week, I’m feeling pretty good.
Brian: So we attended a rotary club fundraiser event, I understand you’ve identified some triggers.
Lupe: That is correct. That weekend it was sunny, that was live music and there was free booze. And I thought I’ve been feeling pretty good, I’m going to have a couple of drinks. So I had a couple of beers and I believe that was my trigger because I felt pretty good. The next morning I woke up a little bit, hung over and it was kind of downhill from there.
Brian: And she was hurt. She spent that day on the recliner underneath the blanket, pretty much sleeping most of the day.
Lupe: And it was more than a hangover. Again, I believe that was my main trigger… one of many triggers, but I do believe that was the main trigger.
Brian: Yeah. The alcohol consumption, the sun, outdoors, there was a breeze so that wind will dry you out even more.
Lupe: I was feeling really good, so it’s easy to backslide, you know? Started doing what you used to, which was a bad idea.
Brian: So, identifying these triggers, did you make changes to your diet?
Lupe: Well, A, I swore off booze and I cut meat from my diet, again. I do backslide, but I’ve been off of meat for several weeks now. I added more veggies, the greener the better. And I added a morning shake to my routine. That includes… it’s a protein shake and includes bananas and veggies… something called Super Greens and I also included Tumeric. And I do add that to my shake as well. And by I, I mean Brian, he makes the shake. Tumeric helps with inflammation and I’ve been feeling pretty good so, um, I’m pleased.
Brian: So in addition to hitting the wall, changing your diet up, any changes with the med’s?
Lupe: I went back on my Plaquenil, although, now that I identified the trigger, which I believe was alcohol, I don’t believe that the Plaquenil was… cutting the Plaquenil was making me tired, fatigue. I don’t believe it was that. I think it was a combination and mainly the booze. But on top of that I added CBD oil. We went to the Farmer’s Market after, after doing a lot of research on CBD oil, we came across a couple of vendors and we stopped and talked to one, ask several questions and we were lucky enough that a pharmacist was also buying CBD oil.
Brian: And that pharmacist, uh, her name was Dr. Karine Wong, she he is Doctor of Pharmacy.
Lupe: That’s correct.
Brian: And uh, she was gracious enough to give us 10-15 minutes of her time, and not only answering our questions but encouraging us to try CBD. So, anytime a western doctor encourages something that’s non pharmaceutical, I really hold that close to my heart. So, we ended up purchasing a bottle at 250 milligrams. And how much of that are you taking?
Lupe: I’m only taking half a dropper, because I didn’t know how it was going to react to it. So yeah, that’s I started off with half a dropper.
Brian: How has that CBD affected you?
Lupe: I feel it helps me with brain fog. I’m not as fatigued. It helps me with pain and it also helps me sleep. I usually sleep 3-5 hours a night. And I’ve been sleeping like a baby, 8 plus hours. So… and I actually wake up rested, so I’m very pleased about that.
Brian: And just to let you know, Dr. Wong was such a cool individual. We actually ran through the Farmer’s Market after we purchased our CBD, checking everything out. And guess who we come across, Dr. Wong in her own booth, who makes an awesome, awesome dessert. We then stopped actually purchase some, tried it, loved it, and we asked her to come on the show and she will be on our show next week, talking about Sjogren’s Syndrome and her research into it, for personal reasons. We’re going to share with you what she’s doing on her side hustle with this awesome dessert that we tried.
Lupe: Before we move on, we received a question via social media asking if we were part of the Sjogren’s Syndrome Foundation.
Brian: And we just wanted to be upfront and perfectly clear, Lupe is a member of the Sjogren’s Syndrome Foundation. However, this show is not affiliated with the Sjogren’s Syndrome Foundation.
Lupe: Having said that, this Sunday, we attended the first annual Walk for Sjogren’s in La Mirada.
Brian: And the attendance was a little better than I had expected. It had a decent turnout. There were several vendors there showing their products for patients of Sjogren’s Syndrome. They did a cool Circle of Strength.
Lupe: And what you had to do was, um, you put the patient’s name on the first one, I suppose. Well, the way I did mine, I wrote my name and then you kind of make a circle or a chain, a link. And then you, write down the name of your Circle of Strength. So, I believe I wrote like four names down, including my Rheumatologist that I missed so much. And you kind of just link them all together and that’s your Circle of Strength.
Brian: And with this chain, they had a nice little photo area to where you could put it on and take pictures. You know selfies for that Facebook. Ended up being a really good event. We met several really awesome people, uh, to include Steve, the CEO of Sjogren’s Syndrome Foundation. We hope to foster that relationship and hopefully one day have him on the show.
Lupe: And now onto today’s episode. As you know, by the time I was diagnosed with Sjogren’s, I think I had hit rock bottom as far as my energy levels were concerned. So I thought to myself, is there anything I could do that would help with my chronic fatigue? You don’t know what you don’t know.
Lupe: So I thought I was eating healthy and exercising as much as my body would allow, which wasn’t much. But I was still gaining weight and I just didn’t understand why. So, Dr. Ryba my favorite Rheumatologist, he asked me, what does your diet consist off? What do you eat on a daily basis? And I was a little bit embarrassed and I said a normal diet for me includes, Cup of Noodles, chips, all kinds of chips, you name it, I eat it. Sodas, I would have three, maybe four cokes a day. I would have one on my way to work, one during lunch and one during dinner. And sometimes even two for dinner. So, that’s a lot of sugar right there. Um, I had candy, Snickers Bar, Reese’s Peanut Butter Cups. You know, I just love all that stuff. Cereal, ice cream, a lot of ice cream.
Brian: So that brings us to today’s episode on nutrition
Lupe: When we were discussing what the next episode should be about, a young lady reached out to us on Instagram and she said she was recently diagnosed with Sjogren’s. And by recently, I mean two days. Two days before finding us on Instagram, she was diagnosed. She had been going to the doctor on and off. And finally the last doctor she went to diagnosed her with Sjogren’s. He told her the next step for you is to go see an eye doctor. And he sent her on her way without explaining what Sjogren’s was, You know. what should she do next? She didn’t know anything about that. so she was a little bit panicked to say the least.
Brian: So like all people do when they get a new diagnosis, she jumped online and started researching Sjogren’s Syndrome and hit all those same websites and pictures and imagery that we discussed on a previous episode, which throws her into a panic. And she happened to find us on Instagram and DM’d us and Lupe spent quite a bit of time with her and she was very grateful for that. Because you know, when you’re first diagnosed you, you think you’re all alone. And she obviously wasn’t. And that really solidified why we wanted to do this episode now ,on nutrition. And again we’re not nutritionists, so just going to pass on the information that we were given when Lupe was newly diagnosed.
Lupe: Which brings us to the “DONT’S”. The doctor said to me, limit your red meat intake because your body has a hard time processing it. He said chicken and fish was okay, but mainly fish. He said fish was 100% great for you. He said, no dairy, no yogurt, no milk, no cheese, which are things that I was consuming. I was consuming a lot of yogurt and a lot of cheese, causes I love cheese. And somewhere along the lines I became lactose intolerance. So you know, staying away from dairy really helped me.
Brian: And me.
Lupe: PULL MY FINGER!
Lupe: No sugar because my body has a hard time processing the sugars. And not to mention it leaves like a sticky, icky feeling in my mouth. It just feels sticky. Like I can’t get rid of that feeling because again, I don’t produce saliva.
Lupe: He said limit your fruit because A, it contains too much sugar. Even if it’s natural, it contains a lot of sugar. So he said, but if you must have fruit, if you can’t cut it out of your diet, have half a serving. No processed foods, that includes geeze basically everything, right?
Brian: Anything that’s processed. So if it’s in a box, in a bag on the grocery shelf, it’s been processed, to some extent.
Lupe: He said no fast foods. Try to stay away from fast food as much as you can. No caffeine, because it dehydrates you. And I don’t really drink coffee, I only drink tea, but I just had to be sure to buy tea with no caffeine, which is kind of easy, they’re all over the place. He said absolutely no alcohol. 100% no alcohol. And also one more thing he did say stay away from eggs and after cutting all this out of my diet…
Brian: Brian said, what’s left?
Lupe: Then what am I going to eat? Because I don’t cook much, so then what do I do?
Brian: So onto some of the “DO’s and if you’ve ever taken a nutrition class, it’s pretty self explanatory. But I guess us here need to be reminded, every once in a while. So what are those DO’s?
Lupe: Eat more veggies, the darker green, the better. Because they contain a lot of iron. Berries, the darker the berry, the better they are for you because they contain antioxidants. Whole grains, that includes whole wheat, quina, oatmeal, barley. Include brown rice in your diet, instead of white rice. Include beans and legumes, like peas, chickpeas, lentils and soybeans. And he said, eat several smaller meal today.
Brian: What did he say about vitamins?
Lupe: He asked me what vitamins I was taking? And I said none. And so then he proceeded to tell me what vitamins I should take. For example, a Multivitamin, Iron, Vitamin A, Vitamin C, Vitamin D. And along with Vitamin D, he said, try to stay out of the sun because it’s zaps your energy. He said include Omega-3. Biotin, which is good for hair and nails. Glucosomine, which helps with joints and a probiotic which helps you go number two. And I have a hard time swallowing pills… so I discovered Gummies… they’re chew-able.
Brian: And one other thing, if you’re looking for a vitamin gummy in the adult section and you can’t find it, check the child’s section. And adjust the dosage. So the kids vitamin gummy might be 250 milligram to where the adult is at 500. So you would just take two of the child Gummies at 250, to equals 500. For some reason at the stores we go to, there are some Gummies in the child section that aren’t available for adults.
Lupe: So Brian, why don’t you tell us about some resources for nutrition and exercise.
Brian: So there’s a really good website that the USDA puts out and it is called Choosemyplate.gov. And there’s several great tools on this website and there’s tons of information. A couple of the things to take a peek at, the BMI calculator, the weight index of where you should be for your age and height. Uh, and then there’s tons of food resources, as well. But one of the cool resources for food is what’s known as a DRI or a Daily Reference Intakes. You input your age, your height, your weight, and your lifestyle, and this returns to you how many calories you should be taking in a day. But then it breaks everything out into categories of that caloric total. So it’ll tell you how many calories from carbs, fats, proteins that you should be in-taking. Um, so that can be a very valuable tool for you as well to make small adjustments to your diet. To achieve whatever goal it is you’re trying to achieve. The DRI also breaks out how many milligrams of each vitamin you should be consuming a day. And minerals like calcium, iron, and zinc.
Lupe: And there’s even great informational sheet you can download or print. For example, I chose whole grain foods. And it lists 10 points and I’m gonna read them out.
Lupe: Number 1, Search the label.
Brian: So there’s a little information on what to look for on a label of a product that claims to be whole grain .
Lupe: Number 2, Look for the word whole at the beginning of the ingredients list.
Brian: If halfway through the list of ingredients is the first time you see the word whole. There’s not much whole grain in it.
Lupe: Number 3, Choose whole grains at school.
Brian: Great Tips on how to incorporate whole grains into your children’s diet.
Lupe: Number 4, Find the fiber on the label.
Brian: So you want to make sure it contains at least three grams of fiber.
Lupe: Number 5, Is gluten and whole grains?
Brian: So some people that cannot eat wheat gluten can eat whole grains, but pay particular attention to the label if you have a gluten issue.
Lupe: Number 6, Check for freshness.
Brian: Always look at the packaging and make sure it’s sealed appropriately.
Lupe: Number 7, Keep a lid on it.
Brian: So if you’re buying whole grains in bulk, ensure you’re storing them properly with a nice tight fitting lid at home.
Lupe: Number 8, Buy what you need.
Brian: And this just gives you tips on buying smaller quantities to save the money and preserve the food freshness.
Lupe: Number 9, Wrap it up.
Brian: Uh, additional instructions on how to store wholegrain breads after you’ve opened them.
Lupe: And number 10, What’s the shelf life?
Brian: Some whole grains will last 2-3 months, others 6-8. So it talks about how to figure out what the shelf life is of the whole grains and whole grain products you’re buying are.
Lupe: And there are tons of informational sheets out there. You just have to go online and kind of start to what you’re looking for.
Brian: So when you do visit, Choosemyplate.gov, there’s a link entitled My Plate My Winds. There’s a lot of great information in there. Give it a good look over.
Lupe: In addition to eating right, it’s a good idea to keep track of what you’re eating and count the calories along the way.
Brian: To help us do this, we both use FitBit. And the app on your phone, that companions, the FitBit device on your wrist… there’s actually a food logger. So you can log what you’re eating… 9 out of 10, that food item is going to be in the database and already at your caloric take. And you can adjust how much of it you consume and it’ll adjust the calorie count.
Brian: And say, for example, if you make grandma’s favorite meatloaf, you can make it. add up those calories while you’re preparing it and build your custom item in your FitBit profile. Therefore, a month from now when you make grandma’s a meatloaf, again, it’s already there for you.
Brian: But it’s a great way to count your calories and it has that psychological effect. If it’s 3:00 in the afternoon and you really want that cookie or in Lupe’s case, ice cream, but you know you only have 600 calories left, then it kind of guilt’s you into not having that bowl of ice cream at 3:00 in the afternoon because you know you only have 600 calories left. So it’s a good way to measure what it is you’re bringing in versus what it is you’re burning. The FitBit device also tracks calories, burned steps taken, but we’re going to talk more about devices in a future episode.
Lupe: As we’ve mentioned in earlier episodes. I’m kind of a bad patient, but I was sick and tired of being sick and tired. I was lucky enough to have found a doctor that had treated so many patients with Sjogren’s and had so much experience and knowledge about the disease. So I listened to what he had to say and followed his instructions to the letter. And it wasn’t immediate, but I started feeling better within a couple of weeks. I am not a medical professional and I do not personally know anyone else with Sjogren’s, I can only speak of my journey and what has worked for me, But when I stay on track with my vitamins and diet, I feel like a million bucks when I fall off the wagon, I pay the price for days. Believe me, it has happened several times in the past and I’m sure it will happen again in the future. But I encourage everyone to start eating healthy and cleanse your body of the things it doesn’t need. You will start feeling better, so you can live SJOGREN’S STRONG.