Lupe & Brian: Welcome to another episode Sjogren’s Strong.
Lupe: This is Lupe.
Brian: And this is Brian. And this is your weekly podcast discussing how to live an active and healthy lifestyle despite having a diagnosis of Sjogren’s Syndrome.
Lupe: And today we’re very excited. We have a guest with us today. Her name is Patricia Guerra.
Brian: And Lupe said her last name cause I can’t roll my r’s.
Lupe: That’s funny.
Brian: So, Patricia was awesome enough and left us a review of the podcast on her Facebook page and she tagged us in it and that’s what put it on our radar.
Brian: And obviously we watched it, you know, 82 times each. Because she was saying such kind and awesome things about us. And that’s kind of what brought her on the radar. We started following her and the work that she’s doing on her social media platforms and we asked her if she would come on the show and not only share her journey with Sjogren’s Syndrome, but a company that she is part of and some of their products that help manage some of the symptoms of Sjogren’s syndrome.
Lupe: So, hi Patricia.
Patricia: Hello. Thank you for the opportunity.
Lupe: Thank you for agreeing to be on the show. We’re really excited.
Patricia: Me too. I’m excited too.
Lupe: So, as Brian mentioned, you have Sjogren’s, as well.
Patricia: I do.
Lupe: But when were you diagnosed?
Patricia: I was diagnosed in 2015, um, but I had probably, uh, have had Sjogren’s, you know, for a very long time. I wasn’t feeling my best, leading up to 2015. Um, and nobody could really tell what it was other than you must be really tired or you’re not anemic. Maybe you want to take some time off from work, but they really couldn’t pinpoint what it was. But I was not feeling my best.
Patricia: Uh, and all I wanted to was just sleep and sleep for a very long time
Lupe: And you sleep and then you wake up and you still feel the same or worse, right.
Speaker 3: Or worse. Exactly. It was a feeling that just never really went away. And as time, you know, would go by, I had this tremendous feeling of fatigue, muscle pain, joint pain that no one could figure it out. And I also noticed that many other symptoms started to show up, especially the eyes.
Patricia: The eyes were one of those things that trigger many appointments to the eye doctor but it wasn’t until one of the, ah, eye appointment visit, suggested that I needed to go see an ophthalmologist. And the ophthalmologist, within probably within five minutes of the visit started talking about Sjogren’s. And I think I asked, I had to repeat it maybe 10 times because I didn’t really know what it was.
Patricia: And she wrote it down and told me, you need to look it up and I think you may have it, but we need to, we need to work with your doctor in order to find out if this is what it is. And that was my introduction to the word Sjogren’s.
Lupe: It’s like, what is that? Nobody has even heard of that. Don’t even know how to spell it.
Patricia: I had no idea what it was. It sounded very foreign to me. But I was glad that at least someone, within five minutes of looking at me, ah, mentioned the word. To me, it sounded like it was, uh, it was leading up to something that I had never heard before.
Patricia: And within minutes, uh, she started talking about what she knew about the disorder, illness, uh, however you want to describe it. But she did mention to me, you know, we need to, it’s a team that you get to work with, now. You know, you have to see our rheumatologists. You have to, uh, talk to your doctor because if it is Sjogren’s, you know, we need to treat it as a team.
Patricia: So many things were thrown at me that day and being the kind of person that I am, I immediately resorted to go on Google.
New Speaker: For a search on what it was. And, uh, I panicked.
Patricia: I didn’t know what it was. I had not spoken to a doctor. Nothing had been confirmed, but it felt like a life sentence.
Patricia: Yeah, it was terrible. I think it was the first time in my life that I actually felt as if someone had handed me a note saying, you only you’re about to expire. And I just didn’t know how to describe it. And I panicked a lot. And appointments were made, uh, and until things are confirmed, you know, people started telling me, Oh, do not panic, you know, way until the confirmation is, uh, it’s, it’s made that, uh, to me it just feel like a life sentence.
Patricia: And I felt that it was leading up to a diagnosis, that meant, it meant nothing to me at the time because I had not had the confirmation, but at the same time it felt like it was leading as to what confirmation that I didn’t want to hear. And I was totally unprepared to deal with because I had so much going on at the time. But it just felt, it felt definitely life was falling apart.
Lupe: Yeah. I think we all kind of because we’ve never heard of it. You kind of gets numb when they’re talking to you about it.
Patricia: Correct. Yeah, absolutely. And that’s exactly what it felt like. Ah, and the doctors, I felt, at least my GP, my general practitioner, I felt that were very ill, um, prepare to do even guide me or even tell me anything about, uh, during that initial stage, anything about Sjogren’s because they kept saying, we’re not experts. You really have to go see a specialist. You really have to go see a rheumatologist. And that added more anxiety at the time. And it was ah, it was a rocky road, uh, for sure at the very beginning.
Lupe: It seems like the doctors, if you ask him, they don’t want to talk about it because they’re not rheumatologists. So it makes you panic even more.
Patricia: That’s it, and I’m finding more and more, and this is just, you know, my own personal experience, it is something that I struggle with, with my own, uh, team of, uh, rheumatologists. I do say team at rheumatologists because I, after I saw the first rheumatologists and got a diagnosis that did not feel confident, um, I went through all of the battery of tests. I went through the blood tests. I had, um, the eyes tested and then I had to do a biopsy. And the biopsy that I had, I was already very panicky. And the biopsy that I had at the first hospital, um, was going to be done with the help of the student doctor.
Lupe: Oh my God.
Patricia: An intern and I immediately decline. I did say, you know, you cannot touch me. I am already panicked about this, so I need to have someone that will have to do a bit. But because it was a teaching hospital, I had to go to another hospital in the person that did it was not regularly experienced doing decide to biopsy.
Patricia: So one of the things that I was told was that I had the risk of a using feeling on my lower lip, which did happen. Um, that did not go well because I ended up having two biopsies and both of them were inconclusive, even though I seem to have all the symptoms. And the two rheumatologists that I’m with, I do seem to exhibit Sjogren’s. It’s still very inconclusive.
Patricia: Given all the battery of tests.
Lupe: So the lip biopsy, what I’ve heard lately and talking to a Sjogren’s patients is that the lip biopsy, it’s supposed to be 100%, but they’re not sure.
Patricia: Yeah, it’s uh, both of them. I ended up having two. Um, the first one, um, came inconclusive. I lost, uh the feeling I do feel, you know, a kiss on my upper lip, but I do not feel anything. Like if somebody kisses me, sometimes, I feel it, sometimes I don’t, depends on where they kiss me, But my kids, you know, sometimes when they kiss me, I can’t feel it and that’s one of the saddest things that happened as a result of that first biopsy.
Patricia: But the second biopsy is done by a medical doctor, um, in a hospital setting, um, also came inconclusive. And, but because I have all the symptoms that are textbook definitions of Sjogren’s they still say that I have Sjogren’s and that’s my, uh, how can I put it? It’s one of the things that I don’t understand about the rheumatologists. I don’t trust them. Um, but they are still treating me as a Sjogren’s patient. Um, but it’s, it’s frustrating.
Lupe: Wow. I’m sure. And you know what after they botched the first one, you let them cut you again. Oh my God,
Patricia: I did. Um, I, I feel that the, uh, the hospital and the doctor that was going to do it knew what they were doing and it made me very… it gave me the confidence to go through the second time because I so badly wanted a label.
Patricia: Because I felt that even though I had gone through a battery of tests, my label was not definitive and I just wanted a label so that I could say, I have this. It is 100% confirmed, but I still don’t have it. But according to the doctor, the two of them rheumatologist, I do have it. So I’m holding onto that. It is where I’m at right now. But it was frustrating to get me there.
Lupe: Wow. And the blood test didn’t work, Huh?
Patricia: No, I had one of, um, I had a marker the first time in the second time. And when I went to see the second rheumatologists, he said that the markers were inconclusive, whatever that means.
Patricia: And then I’m at the point where I want to go see another rheumatologist and they have told me that more than likely, it may or may not show up. But because the first battery of tests did have that marker, they’re holding onto that and given all the symptoms that are notorious for Sjogren’s, like the eyes, the dryness, fatigue and muscle pain, the joint pain, arthritis, which I do have. Um, and it has impacted my mobility. Um, sadly, um, you know, they’re still holding on to the idea that I do have Sjogren’s. But, oh, who knows.
Brian: So with everything that’s gone on, what are the major lifestyles that you’ve been able to change or adapt that have helped you with the symptoms of Sjogren’s?
Patricia: Well, this is where I resorted to different, um, ways of treating Sjogren’s in a more holistic way. In my personal journey, I had felt that there is, I think in Western medicine definitely has a purpose in my journey. And I will resort to it when I think it’s needed. But I think the initial, uh, medications that I was on and I was, um, I never know how to pronounce the other medication that I was on at the very beginning, but it’s the, uh, uh, the medicine that you like you and you have Malaria.
Patricia: Um, and I was on for a good year. I exhibited just about every single side effect that the medical claims that you can have. I was not doing my best. I think at times. Um, I became very depressed, very anxious. And I wasn’t really showing up in a good mental state, not only for my family but also at work, where I had a very demanding job, at the time. A very corporate, my job. And so when I was on this, um, I forget the name, malaria.
Lupe: Yeah, I know it’s called the brand name is Plaquenil.
Patricia: It’s been a little while.
Patricia: So, the Plaquenil that they gave me did not, did not agree with my body at all. I think if anything, it just, I was just a very different person and I did not like it. And I was in a lot of pain. I had a lot of muscle pain and it was really difficult for me to get up in the morning.
Patricia: And after a year I decided to start consulting with um, with a natural path, as well as, uh, a Chinese medicine doctor, who examined and make some recommendations. But the approach that I ended up taking after a year was a little bit more holistic.
Patricia: And something that the doctors, the rheumatologist that I was at working with, were not really sure that it would work because I thought that perhaps, you know, food could be used as medicine and I wanted them to sort of, that, you know, give me a stamp of approval that it was headed the right direction. But you’re never going to that from the medical community. Well, at least, I did not get that.
Patricia: I was getting that for my natural path, my other and my Chinese medicine doctor. And I think a combination of changing my diet. So, going from eating everything, anything that I thought it was good, but changing it to gluten-free. Um, making a few changes to my healthy habits, which I didn’t have any because I had a job that required for me to sit all day and for me to travel, um, every week.
Patricia: And I went from that to, you know, just a little bit more each week, um, is something that I struggle with because as much as I want to move, sometimes the energy is just not there. And there are good days and bad days.
Patricia: But, uh, just integrating movement, uh, integrating more veggies in my life and I’m more of a plant-based diet. Uh, definitely taking the gluten out of it and drinking a lot of water, something that I wasn’t doing enough of and sleeping more. It sounds easy, but for me, it’s been a challenge and it continues to be a challenge. In addition to other supplements that I take, I think it’s worked for me for most of the time. It’s not a bulletproof method, but it seems to be a method that works, a good majority of the time.
Brian: So, the plant-based gluten-free diet has been one of the, would you say that’s helped you more than anything else you’ve started or incorporated?
Patricia: I believe so, in my case because one of the things that the natural path indicated was that inflammation needed to be contained. And going plant-based was definitely something that I needed to consider, right away, because of the Plaquenil, I took it for over a year. She also recommended that I needed to look for a probiotic that, you know, would sort of cleanse during that period of time that I was sort of trying to get rid of the effects.
Patricia: And then just the overall feeling of not feeling myself after I decided to… and it was my decision, not the doctors. The doctors were quite happy to put me on the medication, but it was my decision, um, and my decision only to stop the medication. And I think that the plant base definitely made me feel better on the inside. It contributed to getting me a little bit more alert.
Patricia: It’s not a bulletproof solution, I still struggle with it. But I have had more, I feel like I can be a little bit more like my old self. And this journey with the few modifications that I made than before, where when I use to eat just about everything, not knowing that with a few changes perhaps your life could feel better.
Patricia: So, I’ve been very meticulous about finding in very interested in finding ingredients that are anti-inflammatory, uh, that I can incorporate in my everyday cooking and my everyday diet, um, but not only I get to enjoy it, but my entire family. Because I end up, you know, doing most of the cooking, most of the time. But when I do cook, you know, I do use an anti-inflammatory diet.
Lupe: So are you, are you consuming, for example, me, I had to cut out red meat and dairy. Are you consuming dairy and red meat?
Patricia: No dairy but red meat I do have it. I do have it, um, probably once every two weeks, but I still have it. Um, I still go back and forth. Uh, I think it would be very difficult for me to give it up completely because of my family. But I do see the day that I, that I can give it up. Uh, and maybe that day is not far away. But right now what works for me is having it every other week. And we’ll see how long I can continue doing that.
Lupe: Absolutely. Are you on any other medication like for the pain or inflammation or just you just got completely off of the meds?
Speaker 3: Completely off. I’m not on any medication at all. I made a decision a year and a half ago that I really wanted to start just using food as medicine. And I’ve taken a class on anti-inflammatory cooking, which I find that it’s just changed the way I see food. And I really truly believe that there is a way, perhaps you know, to find relief from some of the most obvious symptoms that I have, uh, with Sjogren’s, you know, in food.
Patricia: Uh, I think, you know, my journey has seen rocky. It’s just being trial and error, talking to different people, trying to see what works for them and see if I can try it and see if it works for me. But, I truly believe that food has made a bit of a difference. Um, but as I say, you know, its I still have my good and bad days and, uh, this week was a good one.
Patricia: And I look forward to other days like that. And other weeks like that.
Lupe: Good. And you’re pretty active, right? You go outdoors?
Patricia: I do. I also have small kids. For instance, today I took my little one to the park and uh, I got my steps. Um, I have move every single day. I made a commitment and it won’t always work and just say, you know, good days, bad days, But they keep me active. Having to run around them or having to go to activities with them makes me move.
Patricia: And my little one also has a physical challenge. She was born with Cerebral Palsy. So one of the main concerns that I had when I was diagnosed with this disorder was, I got to get better because I need to look after her. I need to be there for her. So that if my motivation, even on bad days, to move. Because when I see her struggle, I said, well, nothing compares to what she has gone through. So I move. So having that motivation, that mindset, that, um, you know, I need to do this not only for her but also for my other child, it’s my motivation to move.
Lupe: Yeah. Yeah. I totally understand that. Like, I don’t have any kids, so when I’m tired, it’s like I don’t need to get up, you know. But it’s good to have someone, little ones that depend on you to keep you moving. Absolutely.
Patricia: Yes. Yes, for sure. Yeah. They definitely keep me moving.
Lupe: Let me ask you one more thing. Are you taking any eyedrops or you’re not on any eye drops or prescription for your dry eyes?
Patricia: No, I do take, um, some eye drops. Prescribed, sorry, I’m having a blank right now on the drops that I have. But they are prescribed.
Lupe: Is it Restasis
Patricia: Thank you, Restasis. I do take Restasis, and I’ve been taking it for, uh, about a year and a half. I find that the winters of probably the toughest period for me dealing with Sjogren’s because here in the part of Canada where I live, we have a good variety of uh, extreme. And on days where it’s very, very cold and I have to drive quite a bit, not only for work but also for appointments with the kids or myself, I had to use the car. And whenever the heat is hitting me on the face. I find that my eyes dry quite badly.
Patricia: We’ve been talking that maybe in the winter I may be doing plasma draws, where they take your own blood and uh, they, it goes through a process where they sort of use that same blood and you use them as drops on your, in your eyes and they’ve been talking about perhaps, you know, exploring that option in the wintertime because there’s been a lot of success with patients that have tried plasma drops.
Patricia: So, we’ll see whether that gets me some relief in the wintertime. Aside from that, I also use high-low, um, which are another, uh, drops that I can use a more, a little bit more uh, more often during the day when I had periods of dryness. Um, but again, I don’t find that the summertime is as bad as the winter.
Brian: Did look for alternatives to meds lead you to Arbonne or how did you discover Arbonne?
Patricia: No. Arbonne sort of came into my life after my corporate job. After I left my corporate job and at that time I knew nothing about the product and not being a product person myself. I was not really drawn to the product.
Patricia: When I did decide to become an independent consultant with Arbonne, I was drawn to the nutrition products, after I had, had conversations with my natural path to go on a gluten-free diet, for a while and to subscribe to a plant-based.
Patricia: I noticed that the products were both plant-based, vegan, gluten-free. So, I checked all the boxes and I started with the nutrition, which sort of looked exciting to me. And it wasn’t probably six months to my journey with Arbonne that I started incorporating in my lifestyle. The product that I started with the nutrition, that is what I was really drawn to. And they had this program where for 30 days you get rid of that food allergens in your diet. So anything that has gluten, that has, you know, any dairy and for 30 days. And I found that during the 30 days that, I really was conscious about what I was eating and subscribed without cheating for 30 days, to a plant-based diet.
Patricia: I started feeling much, much better. I had a little bit more energy and that’s when I started taking some of the supplements. The supplements would give me this energy level that I never really knew I had or that I had never thought it was possible to have again. I don’t drink coffee, I’m not a coffee drinker. I drink a lot of tea and tea is normally herbal for me. And when I had various supplements that the Arbonne line had and had B12 than energy, you know, energy boosters, it just really gave me a different vibe and it just made me feel more energetic and more alert. That’s when I started really paying attention to what this can do to me and what a difference it could do to my health. So that’s when I really discovered them.
Brian: Arbonne has products across multiple categories of skincare, beauty, food, nutrition. How many of those categories have products that you utilize that help you manage your Sjogren’s?
Patricia: Um, I would say all of them in different stages. I think that skincare has definitely taken care of my travel in the winter with eye dryness, especially around the chin and around the, um, uh, the ears, I don’t know why, but around that area in the winter, I just have episodes of, um, dryness. But they’re really, really bad spells of dryness in the wintertime. And the skincare has definitely helped me to get better, or I used to maintain a level where it doesn’t get very uncomfortable with the, uh, what the itchiness.
Patricia: Um, the shampoo has definitely made my hair healthier and less itchy. I think some of the botanical ingredients have definitely helped me, um, get over the, uh, itchy episodes that I have had. Ever since I’ve had a Sjogren’s, it comes and goes that in the wintertime is probably the worse.
Patricia: The nutrition, um, with levels of, um, energy, especially, I think that it’s been remarkable, how much I have relied on the energy boosters and the, uh, mental health. Uh, one of the products that just keeps me more alertness.
Patricia: One other item, especially in the winter, I was born in a tropical country in El Salvador and I was always outside when I was a kid. Moving to Canada was never really an issue, but as I got older, I noticed that when my skin would get exposed to the sun, I would get a terrible allergic reaction on my, uh, on the areas where I put fire or so around the elbows, um, around the, uh, the neck behind my knees and out with, um, what Sjogren’s I notice that my skin is extremely, extremely sensitive to the sun. And if I’m biking or where my hands exposed or if I don’t cover them with sunscreen. And even if I do, so I feel get the, um, very discomforted levels of, uh, itchiness in Eczema or you know, that I just cannot get over. So some of the baby products in the line such as a diaper cream has definitely been that sense, uh, in giving me the relief that I, that I need just to calm the itchiness.
Lupe: Um, like a heat rash. I get heat rashes too with the sun.
Patricia: Yes. Yeah, that’s exactly it. That’s exactly what it is, a heat rash.
Lupe: I want to know, um, Arbonne, everybody talks about this fizz that you put in your water. What is this fizz about?
Patricia: The fizz stick is a powder that you add to your water. And one of the things that I, uh, that I have discovered is that the ingredients are botanical. It’s got a lot of, um, ingredients that, um, provide you this, this level alertness and that level of sort of energy that you would normally get from having a coffee or an espresso, I guess. I’m not a coffee drinker, so I guess that that’s the feeling that you would get. But, um, I find that not only does make me drink water, which is really important because I get dry mouth from having Sjogren’s. And having a liter of water is difficult sometimes. Um, I don’t know anyone that gets excited about drinking water. I certainly don’t.
Lupe: Not me.
Patricia: But having a little bit of flavor to my water, especially when I drink water, a liter of water, first thing when I wake up, it sort of starts my day on the right foot, I find. So what it does is it’s got Guarana, it’s got green tea, it’s got, um, natural caffeine that just keeps you those B12 and vitamin D ingredients, in this powder that gives you that energy booster, during the day, if you need it. I normally just have one a day, but some people can go up to two, depending on how many you want to have. But normally they recommend that you only have two a day. And, but I normally have one. But I just find that you know, it gives me that spike of energy that I need first thing in the morning.
Lupe: Yeah. That, that’s something I’m really interested in because I don’t like drinking plain water. It just tastes awful to me. And Brian doesn’t believe me, but I think because I have Sjogren’s, different water, people say it doesn’t taste like anything or it doesn’t have any taste. But it does. I can taste the difference in, in the different brands. But I don’t like drinking water by itself because it just doesn’t, I don’t know, it doesn’t taste good to me. But, so usually what I’ve been doing lately is I put, um, I put Gatorade in it. But Gatorade has too much sugar and I want to, I kind of want to wean myself from putting Gatorade powder in my water. And so that’s why I asked about it cause I think that’s something that I’m really interested in
Patricia: that really got me hooked to nutrition products, to be honest, the energy fizz sticks that the nutrition line has. And I think it was the different flavors at the time. I think I was addicted to the, uh, citrus uh, flavor because it just added a different flavor that I was not used to. It made me drink more water. I normally just dissolve it in a liter and I feel that you know, I’m drinking the amount that I need to flush the toxins that I need to, uh, to do every single day.
Patricia: But I’m also putting the water that I need in order for my mouth to be, uh, to not get dry because that, that was a problem that I had initially with Sjogren’s. And I was finding too that every night I was waking up because I was very thirsty and because I was drinking moderate, which the whole time I was drinking, I was at waking up feeling very thirsty. I would go to the washroom in the middle of the night, which was disrupting my sleep. So it was something that I just didn’t know what to do, but instead of spreading my water intake throughout the day is smart in, by the time I go to bed, I don’t feel the need to be hydrated because I feel like I had been hydrating to the point that by the time I get to bed, I’m good. If you know what I mean.
Lupe: Yeah, absolutely. I totally know what you mean.
Patricia: Well, and for everybody who wants to learn more about Arbonne and their product line and what they have to offer in the show notes, we will have links to Patricia’s Facebook, Instagram and Arbonne page. And there are ways you can contact her there if you have specific questions about the products and the way Arbonne works. So before we part ways, Patricia, what parting words might you leave with our listeners?
Patricia: I think, um, understanding Sjogren’s is complicated. It’s not a life sentence. Sjogren’s is a journey and it’s uh, is a journey of discoveries and I think um, not settling for what people tell you to accept is something that is, will continue to be your challenge during your journey. I think you know, finding what works for you is something that everybody has to strive for. I think, you know, what works for me may not necessarily work for others.
Patricia: My mom has Sjogren’s and what works for me doesn’t necessarily work for her, but I think that finding what works for you, whether it’s a team of individuals that are advising you or whether it’s a rheumatologist that just gets it, if it works for you, just go with it and be open to your suggestions. Be Open to a journey that will be unlike any other that you’ll be on.
Lupe: Be Your own advocate. If you’re not happy with something that the doctor tells you or wants to put you on something, keep pushing for something else.
Patricia: 100%, I couldn’t agree more.
Lupe: Yeah, so most definitely. Well, Patricia, I want to thank you for being a guest on our show. We really appreciate it. We really appreciate you sharing your story and talking to us a little bit about Arbonne and it’s definitely something that I’m interested in and I’ll be talking to you more about it offline.
Patricia: Okay. Excellent. Thank you so much for giving me the opportunity to, to be open about this disease that’s been part of my life for the last four years and for having the opportunity to tell you a little bit about.
Brian: Patricia was awesome speaking with you.
Patrick: Thank you.
Lupe: Thank you, Patricia.
Lupe: Everybody’s body’s different and will react differently to medication and diet. We look forward to seeing how Patricia progresses with her current course of treatment.
Lupe: Until next time, sip constantly and stay hydrated.
Patricia on FaceBook: https://www.facebook.com/wellnessdelish/
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