Lupe: We are neither nutritionist or medical providers. The topics discussed on this show are from our own research and experiences. Please consult your medical provider before attempting anything discussed on this show.
Brian: This is Brian.
Lupe: And this is Lupe.
Brian: And we are going to talk about Lupe’s story today. And this is from prior diagnosis to up to being diagnosed. And if you have Sjogren’s, I’m sure you’re going to be able to relate. And maybe if you’re feeling some of these things, you can have a conversation with your medical professional to help find a diagnosis. So to get this started, Lupe.
Lupe: Hi everybody. So, as I mentioned last week, I was diagnosed in 2008. But I did have symptoms way before that. I’m going to say maybe 10-15 years, maybe more. I want to say some of these symptoms I had way back when I was a teenager. So, how it all started… I just started noticing, not noticing, but I felt like I had sand in my eyes. I just wanted to stick a pen in there and scratch my eyeballs out. It was just… my eyes were just really irritated. I also had really dry skin. I remember calling all my sisters and asking them, what do you guys use? Because I just felt like sandpaper. It was awful. I had unquenchable thirst.
Brian: I think she’s a little parched right now.
Lupe: I am… I have my water right here. I had an unquenchable thirst. Um, I just kept drinking water, water and I just wasn’t satisfied. My body ached. I felt like my bones hurt, my muscles hurt. Everything was in pain, especially my legs.
Lupe: I felt like I always had to be under the covers in a fetal position because I was always cold. So, I remember having joint pain. My elbows, I felt like they were gonna come out of their sockets. So, like if Brian and I were at the beach… you know, we’re walking, holding hands and he was swinging my arms and I just told him to stop because I just felt like they were going to come out of their sockets.
Brian: And I was like, what’s going on? I couldn’t believe that just a swinging motion as we walked down the beach actually hurt her.
Lupe: Yeah. Like I said, my entire body, ached to the touch, I was very sensitive. I would bruise easily. I think extreme fatigue was the main complaint that I had.
Lupe: I would make myself go to work. I would roll out of bed and when I came home I wouldn’t even change clothes. I would just go to bed, wearing the clothes that I went to work in. And I remember in the mornings, just the thought of getting up, just made me really tired. Because I had to go through other steps in my head. Like, okay, I have to remove the covers. I have to get off the bed, I have to, you know, turn on the water, stuff like that. Step by step. Just thinking about it, just got me really tired.
Lupe: I remember I called out of work for like two weeks, which is really abnormal for me. Uh, you can count on me, always been 15-20 minutes early. So that was, that was a tale for me.
Lupe: I remember not having energy to reach for a glass of water, that’s how fatigued I was. And I know that’s hard to believe. How could you not have enough energy to reach for a glass of water? But it’s the truth.
Lupe: I didn’t have energy to talk. For example, I remember one time, Brian and I were driving down the 405 and he was talking, talking, talking, and he was just in a yappy mood that morning
Brian: Yappy mood,
Lupe: And he just kept talking and talking and I just didn’t have the energy. And finally , because he wanted, he wanted to have a conversation and I didn’t have the energy. And so I finally said, you know, can you stop talking because I do not have the energy to talk? And he said, what do you mean you don’t have the energy to talk? You know, that’s how tired I was.
Brian: Does wonders for the ego.
Lupe: Oh, and on that note about extreme fatigue, I didn’t have energy to go shopping. Can you guys believe that? How did I not have energy to go shopping? But I didn’t.
Lupe: I stopped being social. I stopped hanging out with my family. I didn’t have the energy, uh, to talk to them, to get dressed, to take shower, to get out of bed. I didn’t have the energy… um, my friends, I stopped hanging around with my friends because who has the energy. You know, I didn’t have the energy to get out of bed, let alone be social, you know.
Brian: And at that age. I’m sure a lot of your social activities had to do or involved a bar and alcohol and dancing and things of that nature, which combined with the Sjogren’s diagnosis just don’t really work well, right?
Lupe: Absolutely. And I mean, yes, I did drink a couple of bottles of Tequila each tonight. I’m exaggerating, but…
Brian: So how much did you have to drink?
Lupe: I’m kidding. No, but I didn’t have two bottles of Tequila at night, but you know, I had a couple of drinks a night. And then the following morning I would just feel crappy. And sometimes I didn’t even feel like I drank that much and I feel crappy you know… alcohol dehydrates you… so, so there you have it. So that didn’t help me.
Lupe: Brain fog, brain fog… I had a lot of brain fog. I thought I was… I was getting nervous because I thought I had early signs of Alzheimer’s. And I had to write everything down, especially when I was at work.
Brian: So, folks in the comments, let us know what you coined this term. I called it Lupe-isms. And then I had to learn this modified Lupe-ism signed language. She waved her hands around, frantically searching for words.
Lupe: Yes, it was terrible. I forgot my words. I didn’t know how to speak to Brian other than sign language because I didn’t know how to speak.
Brian: And we don’t know sign language people.
Lupe: Extreme brain fog, very forgetful. I had to write everything down like I said, especially at work. Um, it was awful. It really was.
Lupe: TMI… but, um, I was extremely constipated. Um, I would go, maybe… I would go number two, maybe once a week.
Brian: I would go number two. I made a good poopy. And now folks, I get texts. You know that poopy Emoji… I know exactly what it means.
Lupe: Okay, now that that’s true. Because you know why? I used to poop once a week. And now, oh my God, if I properly and hydrate, I poop once, sometimes even twice a day. So I get very excited about that and I’m guilty. I do text him., Yeah I pooped!
Lupe: Dentist, I didn’t realize I had dry mouth until I went to see my Rheumatologist for the first time. And he asked me, do you have dry mouth? And I said no. And he said, open your mouth.
Lupe: He said, open your mouth. So I opened my mouth and he put the tongue depressor in my mouth and it got stuck to the side of my mouth. And he’s like… and then he tried to pull it away and he says, yep, you have dry mouth.
Brian: And it’s funny because from, you know, what we’ve read and the research and talking to others with Sjogren’s… it’s hard for somebody with Sjogren’s, that’s experienced it for so long to realize what a moist mouth is. They’ve never experienced it.Or they haven’t experienced it in so long… they think what they’re feeling is normal. So, under the care of a good physician, like her first rheumatologist was, you know, uh, there’s a lot of discoveries being made.
Lupe: I didn’t really have dental issues because I am the type of person that …
Brian: She’s a freak.
Lupe: No, I’m not afraid. I like having nice teeth and that’s the first thing I notice, are teeth. So I like having nice teeth. I go to the dentist every three to four months to have an examination and so they could clean my teeth. Um, but the one thing that I didn’t notice was sometimes I noticed I had bad breath and I didn’t know if it was just me. Nobody actually told me, hey, you have bad breath mint. But I just, I felt that I did, so… And I think that’s because of dry mouth.
Brian: We kinda wanted to tell this story, um, because a lot of people might not be aware of these symptoms. If you have Sjogren’s and it’s been diagnosed and you’ve been living with it for awhile, you understand what it is. For those that haven’t been diagnosed and you’re feeling any of this, hopefully this helps you again, have that conversation with your doctor to come to a diagnosis.
Brian: But the good news is, the silver lining is, that once the diagnosis was made and we immediately started reading… I’m sitting here looking at a stack of books, that had been purchased over the years on Sjogren’s. We made a lot of adjustments to life. From what we eat to constantly sipping.
Brian: You know, one of the things she’s dealt with, and I’ll let her tell the story is, is she doesn’t like just plain water. So we went through Propel, Gatorade, Liquid IV. We tried all of these things and she loves the Gatorade, but…
Lupe: So, the Gatorade has a lot of sugar. If I put powder Gatorade in my drink, I will drink it like it’s beer, right? Because we all down beer. It would just go down smoothly. But then I realized it has a lot of sugar and my body can’t really process sugar. So, I didn’t know what to do because without Gatorade I wasn’t drinking enough. So then, yes, we tried Propel, you name it, we tried it. Um, and then finally, I don’t know where it came from… putting lemon.
Brian: Yeah, we have lemon concentrated in the house, the majority of the time. And um, either, you know, we’ve, we’ve squeezed fresh lemon or lime into the water. But, um, just a couple drops of the concentrate in her, I don’t know, 20 ounce glass that she carries around with her constantly.
Lupe: It’s my lifeline.
Brian: It seems to work.
Lupe: A few lemon or lime drops and I like a few shakes of salt in my water because, I do remember that my Rheumatologist said that salt helps you retain water.
Brian: So in addition to the diet, um, what other kinds of accommodations have you made in life too?
Lupe: I stopped eating sugar. Ice cream, candy, you name it. Anything with sugar because again, my body can’t process sugar.
Brian: And when we say stop folks, um, 99.9 % of the time we’ve stopped. On occasion we’ll still have ice cream or …
Lupe: I love ice cream, it’s my crack.
Brian: It’s her crack.
Lupe: I like putting whipped cream on it and a crumbling Frosted Flakes on it, people. It’s really yummy. You guys should try it.
Brian: And I thought it was kind of weird when she first offered me ice cream and I said, sure, I’ll have a bowl. And she brings me a bowl of ice cream with whipped cream and on it. And I’m like, okay, I’ll give it a try.
Lupe: And he loved it.
Brian: It’s good, people.
Lupe: It’s pretty awesome. I changed my diet. Um, no sugar, no dairy. My body can’t process dairy. And my Rheumatologist did tell me to stop eating red meat. I followed his instructions to the T and I felt a lot better.
Lupe: He said introduce berries and cherries and he said the darker the berry the better it is for you because it has antioxidants.
Lupe: But I do want to back it up a little bit to when I was first diagnosed, I did go to several doctors throughout the years. And they told me… they checked my blood. Oh, it’s your thyroid or your anemic or they would look at me like I was on crack because I had all these phantom pains. Maybe they thought I was a hypochondriac, I’m not sure.
Lupe: And finally I went to a different doctor and I changed primary doctors. And I went for an annual and at the end she was almost on her way out and I said, hey, I just wanted to tell you… I said lately, not lately, but for a long time I’ve had pain in my legs and I feel it in the bone.
Lupe: And she said, okay. And she just wrote up this lab script and she said go to the lab. And so I did. I went to the lab and she called me a couple of days later and she said… hey, you need to go see an internal medicine doctor. And I said, yeah, okay. I’ll go. But I’m such a bad patient that I didn’t go. And Brian will tell you I’m a bad patient.
Brian: Very, very bad patient.
Lupe: And so she said, go see an internal medicine doctor. And I said, yeah, okay, I’ll go. And I didn’t. She even told me.
Brian: Six months later.
Lupe: She even told me… she gave me the number of who to call, who to go see… call this doctor. And I didn’t because I’m like, big deal, you’re a year, my primary physician and you’re sending me to an internal medicine doctor. And it just didn’t make sense to me. So I didn’t go.
Lupe: Six months later she called me back and she said, hey, you haven’t gone to see your doctor. And I said, what’s the big deal? I feel fine. She said, no, you need to go make your appointment today. So I kind of freaked out a little bit. And I did go.
Lupe: You know, they asked me a bunch of questions and then they took more blood. I was like a human pin cushion for a couple of months. And so finally that doctor calls me back… a few days later and he says, hey, you got Sjogren’s. And I said what is Sjogren’s? And am I going to die? Am I going to die tomorrow? And he’s like, nope, this is not going to kill you. And so I’d never heard that.
Lupe: And so I asked them to spell it out for me. And he did. So, what was the first thing I did when I hung up the doctor, I jumped on the Internet. And I started reading all about Sjogren’s and it kind of freaked me out a little bit.
Lupe: So, then what do I have to do next? He said, you need to find a Rheumatologist. So, I went online I’m looking for Rheumatologists and I didn’t know who to go to because, um, the clinic that I go to. They didn’t have Rheumatologists. And so I had to go outside of the clinic.
Lupe: And so I went online and I did a lot of research. So, finally, I found somebody close. He was in network and I gave him a call and I said, are you accepting new patients? And they said, yes. Well, can I have an appointment, first appointment that you have? I’m thinking they’re going to see me same week, maybe next week. He’s like, first appointment we have is in two months. And I’m like, two months? What am I going to do? I’m sick. I can’t even get out of bed – for two months. So, for two months I struggled with the same symptoms.
Brian: In that time we started implementing things that we learned online. You know, the constant sipping and trying to increase hydration. And then utilizing citric acid to stimulate saliva production. And you know, we did the best we could.
Brian: Um, and again, not that this was life-threatening, but I think the panic and um, everything she was dealing with mentally was probably more trying than the physical ailment. Because she’s been dealing with that physical element for such a long time. I think the brain was just catching up to it. But we finally got in to see the Rheumatologist.
Lupe: I went to see the Rheumatologist, and I was really lucky in that I loved my rheumatologist. He had the best bedside manner and he would actually listen to you and he was, he was taking it all in and then he took the time to explain everything.
Brian: And when she says bedside manner… I have never witnessed a doctor spending as much time with a new patient as Dr. Ryba did. For those of you in the Orange County, CA area that, uh, was lucky enough to be treated by Dr Ryba, I’m sure you will all understand this.
Brian: Um, you know, in the back of my mind, we walked out of there. I’m like, well, that’s cool. He did spend a lot of time with her and me, us. Explaining what was going on and what we needed to do and you know, scribing med’s. But what truly amazed me was the second appointment, he spent just as much time. The third appointment, fourth appointment, and so on until the last visit we had with Dr. Ryba. He spend as much time that he felt we needed until all of our questions were answered.
Brian: He, ah… wonderful, wonderful man. He was very comforting. He broke things down into layman’s terms. And to give you a comparison, we actually went to one doctor who, when we told him that the diagnosis with Sjogren’s, he excused himself and we made the joke that he went out to Google Sjogren’s. Um, he was kind of unaware and need this to say that was the last time we saw that doctor.
Lupe: So my work, they changed insurance providers and I didn’t know what to do. I needed to find a new rheumatologist. And so I did. I went to a couple of different rheumatologists and they just had this deer in the headlight looks and they just did not know what Sjogren’s was. So you know, the insurance still covered labs and, and med’s and stuff like that. So I said, I don’t care, I’m going to keep going to Dr. Ryba and I’ll just pay out of pocket for the office visit, you know. As long as the insurance covers everything else.
Lupe: But um, yeah, he made me feel a lot better. So I was with him and he prescribed a med to me and he said, go get lab work and I’ll see you in two weeks. So I went to get the lab work. I came back in two weeks, he read everything and then he prescribed more med’s and he said, I’ll see you in two weeks.
Lupe: I kept going to him every two weeks for like two, three months until,… you know, he didn’t change my diet or put me on all these med’s all at once. Every two weeks he would introduce something new to me. So, you know, it was a slow process, but it really helped me. And after, after the first two weeks of going to him, I started feeling much better.
Brian: Yeah, it’s very good to find a doctor or a medical care provider that you have a relationship with. And unfortunately Dr. Ryba is no longer with us and we’ve been through a couple of rheumatologists since. And unfortunately I don’t think we’ll ever find another rheumatologist or doctor for that matter.
Brian: Um, it seems like a lot of the doctors nowadays are 25 – 28 years old, fresh out of med school. And they understand the economics of having to turn that exam room enough times an hour so they can maintain a lifestyle and pay back student loans. And it’s unfortunate. Dr. Ryba was obviously, you know, a little up there in age and didn’t have those same concerns. But we were really fortunate enough to not only have him as a medical care provider but get to know him over the course of a few years as a human being.
Lupe: I miss him a lot.
Brian: Yeah, he was a good doc.
Lupe: Every time I need to go see another rheumatologist for a new script or something, I kind of break down because he, changed my life. He made me feel really good and, and I do, I do. I do miss him a lot.
Brian: Life take some crazy turns sometimes, but you get out of it what you put into it. Join us on this journey of positivity and mutually supportive of each other.
Lupe: Look, I don’t like telling people I have feel Sjogren’s because it becomes who I am. But I felt it was important to tell my story because I want to be defined by how I live my life, not by my diagnosis. Sjogren’s is fun but it’s manageable.
Lupe: I was diagnosed 10 years ago and look at me now I am living Sjogren’s Strong. I hike, I cycle, I go to the gym, I walk during my lunch hour.
Lupe: Staying active is as important as eating right. It’s hard for people to understand what they can see. We are here because we want to help shine a light on Sjogren’s.
Brian: Thank you for listening to this episode and we hope you’ll join us next week on another episode of Sjogren’s Strong.