Andrea’s Journey with Sjogren’s Syndrome

Andrea shares her story of living with Sjogren’s Syndrome from pre-diagnosis to present day. We can learn from one another and Andrea is a great example

Andrea’s Journey with Sjogren’s Syndrome

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

Brian:    My name’s Brian.

Lupe:     And my name is Lupe.

Brian:    And today we have a special guest with us.

Lupe:     Andrea Olesky


Andrea: Hi, how are you?

Brian:    Due to a technical difficulty, we’re going to pick up where Andrea describes what led up to her Sjogren’s diagnosis. She’s talking about uveitis

Andrea: … That happens in your eyes called uveitis. And yeah, here’s some things I want you to do. Some prescriptions. And he said, you know, a lot of people get this. And it happens once and it goes away. And we never know why. But if it comes back, come see me again.

Andrea: So it did come back, about a month later. And he sent me to the rheumatologist, who started running every blood test under the sun. And I have the app for the Net Doctors Network, that I’m part of. So, as the test results were coming back, I could see if they were negative or positive. And I saw that I had four positive test results. And I went into Google and I typed in the four different test results that came up positive and it was Sjogren’s, Sjogren’s, Sjogren’s, Sjogren’s.

Lupe:     Wow.

Andrea: Yeah, so that’s,… I guess, leading up to my diagnosis. That’s my story.

Brian:    Well, no, and thank you for sharing that. It seems the common theme as we talked to more and more people with Sjogren’s, is the length of time to a diagnosis of Sjogren’s.

Andrea: Right.

Brian:    Because it’s not typically somebody looks forward there. You go in with dry eyes and they do something to handle that, rather than ruling out root causes, it seems. Or joint pain, you said they extract it and dismissed it. So…

Andrea: Yeah, so it turns out that, you know, I found a really good rheumatologist who specializes in autoimmune diseases and treats, a lot of patients with Sjogren’s. So I was lucky to find her here in the San Diego area. So it turns out my joint pain isn’t arthritic. It’s a tendonitis. So it’s a swelling of the tendons leading to the joint, is what’s happening. So, uh, yes, she has me on a couple of different prescriptions right now.

Andrea: I am lucky enough to be a person who can take Pilocarpine, which is a medication that helps with the production of saliva in the mouth. And I guess there’s a really high, more than 50% of people who try to take it, have a bad reaction to it. So I was one of the lucky ones who can take it without any reaction. I’m just get the benefits from it. And the first time I took it and it kicked in within an hour. And it was like a miracle. I didn’t realize how much I missed moisture in my mouth until I had it back.

Lupe:     And how long do you produce saliva for? With one pill.

Andrea: It lasts for a couple of hours. Um, I take it four times a day. And I usually know that it’s… My body gives me a signal that it’s about time to take it again because I started getting excessively thirsty. Um, and it’s funny because the first time a doctor asked me if I had dry mouth, I said no because I didn’t think of it as dry mouth. I thought of it as excessive thirst.

Brian:    That makes sense.

Andrea: I would drink a big glass of water in the morning and then I would go to work and fill up a water bottle and drink it – the whole thing and then fill it up again to sip on throughout the morning. And I just thought, well, I’m just really thirsty all the time.

Brian:    So how many doctors would you say you saw before you received the diagnosis?

Andrea: Oh Gosh. Well, um, I’ve been to my regular doctor and then gastroenterologist and I see a neurologist for my headaches. And the rheumatologist who I went to who actually ran all the lab work, in the end. Um, I had seen him before because of… I also have psoriasis. It’s a pretty light form of psoriasis. It’s only in a few places, but I thought maybe my achy joints were related to the psoriasis. So I had gone to him a year before and that’s when he x rayed my joints. And he said, no, you don’t have psoriatic arthritis. And that was the end of it. He didn’t look into what it might be. Instead, he just said, nope, that’s not what it is. Bye. Nice meeting you.

Lupe:     That happens a lot actually, you know, just not what you have. Okay. Bye. Yeah.

Andrea: Yeah, yeah. So, and then again with the gastroenterologist to, um, I had, um, just about every test. I can’t even think of some of them, but you know, a couple of different tests where I had to lay in a booth, like an MRI. And a cat scan. And I had a colonoscopy and then they even did a test where they had me swallow a camera. Yeah. It’s like a little pill that is a camera. And they, um, track… Connected wirelessly to a little bag that I had to walk around with for the day. And it records everything into little bag. It took forever to get those results. And then they said, well, it was inconclusive.

Lupe :    Oh, after all that.

Andrea: So, um, and then they just left me. It was the doctor never called me and said, oh, well I’d like you to come in and let’s talk about these possibilities. It was like, oh no, we ran this test and it was negative. So know we don’t know. It just is what it is.

Lupe:     Go find another doctor. Right? Yeah.

Andrea: Yeah.

Brian:    Were you fortunate enough to find a rheumatologist that you are comfortable with and you’re still with or did you go through a few rheumatologists before you found….

Andrea: Well, the one who I am with now is the second one that I’ve seen. Um, and she’s wonderful. I really like her a lot. Um, the first one who I went to was the one who x-rayed me and said, no, you don’t have psoriatic arthritis. And then he was the one who actually ran all the blood work and then wasn’t getting back to me. I called his office and they said, oh, he’s on vacation for a week. So, which he didn’t tell me. So nobody in his office was contacting me. And he finally got back in town and just sent me an email that said, let’s have you come in so we can talk about your results. So I called to make an appointment and the next available appointment was a month away.

Lupe :    Unbelievable, for results.

Andrea: Yeah, for my test results. So I said, yeah, this is ridiculous. He obviously has too many patients or just doesn’t care about the individual as a patient. I’m just, you know, a number. And um, I did my own research for doctors who specialize in Sjogren’s Syndrome, in the area. Because like I said, I had put in my test results that came up positive. And everything I was seeing, said that I had Sjogren’s. And when I went on the Sjogren’s Syndrome Foundation website and looked at everybody’s stories and lists of symptoms, I said, this is me. This is my life. All these people are living my life.

Andrea: So I knew from all that information that, that’s what I was looking at. So I, like I said, I went online and I did my own research to find a doctor in my area and then when I narrowed it down to a few, I um, you know, looked into them little bit more and saw their, you know, their grades on various websites and what other patients have said about them.

Andrea: Um, the doctor. who I’m with now, I found… she actually had a video posted online talking about why she became a doctor. And I said, yeah-yeah, she’s, she’s the one for me. And um, I’ve been pretty happy with her for the past few months. So, I feel like she gets it and she’s addressing all my problems.

Andrea: After I had decided to switch to her, the first doctor sent me an email saying, I’m thinking that maybe some of your test results were false positive. So, I want to run them again. And I said, um, I’ve switched doctors, so, you don’t need to worry about me anymore.

Lupe:     That’s right.

Brian:    Good for you.

Andrea: Yeah. So, I felt like he was trying to prove to me that there was nothing wrong. That it was all in my head. He was determined to, even after all those tests came back positive, he was determined to show me that I didn’t have anything wrong with me. So I just, like I said, I listened to my gut and went elsewhere.

Brian:    Yeah and that obviously sounds like it was a great decision you made.

Andrea: Yeah, definitely.

Brian:    So, how would you say… How would you rate your quality of life now that you’ve been on a course of treatment for a little while?

Andrea: You know, things are definitely getting better. I’m a teacher. So, this school year started middle of August and I’ve only had to take two sick days, so far this year. Um, so I don’t think that’s bad at all. And I’m able to do what I need to do at work and walk around campus. And my family has been really super supportive and that means everything. Um, my husband has been amazing. You know, he’ll even tell me… he’ll see me trying to do stuff and say, hey honey, you know, don’t overdo it. You know, you’re going to be tired later. And he’ll stop me and say, you okay? Do you need help with that? Why don’t you get some rest? So, um, he really, he really gets it. And that makes all the difference in the world. Cause, um, I’ve talked to a lot… other people online who have told me that their significant others have not been so supportive. So, it really does make a big difference. And um, yeah, I feel like I’m, I’m doing well. I’m eating better than I ever have because I’ve gone on this anti-inflammatory diet. So, I’ve been eating gluten and lots of fresh fruits and vegetables. And I’m only eating organic dairy, if any. And I’ve lost about 18 pounds.

Lupe :    Oh hey, that’s good.

Andrea: So, that all helps a lot. So, I just… in that way I feel a lot healthier. You know, I used to enjoy going for a long walk with my husband and I have trouble with that now, because I get edema in my hands and feet, really easily from walking. So it’s, it’s not that I can’t walk because I’m too tired, it’s just the swelling in my hands and feet becomes really uncomfortable. So that’s been one thing I miss. But all in all I, I’d say I feel like I’m doing pretty well.

Brian:    Yeah. Lupe and I hike quite a bit. And we’ve had to adjust hiking schedules into a 3:00 AM, wake up on the road and on a trail head by 4:30 or so, so we can get hiking done before it gets hot, before that sun comes up.

Andrea: Yes. Uh huh.

Brian:    And then, you know, be off the trail and back home. And that seems to be working well, by adjusting the timeline. But yeah…

Lupe :    Yeah. I was diagnosed 10 years ago and…

Andrea: Oh okay.

Lupe:     Yeah, definitely had to make a lot of changes, so I understand.

Andrea: Yeah. Last spring before I got the diagnosis, we were visiting our daughter who’s in college up in Davis. And it’s a really large campus and there are no vehicles on campus. Everybody either walks or rides a bike. And we were walking around campus and seeing all these things that she wanted to show us. And I had to stop. I couldn’t keep walking. And at the time we didn’t know what was going on yet. And um, I could see the look of disappointment in my husband and my daughters faces that, you know, I couldn’t continue walking, cause I used to be able to. They didn’t quite understand what was happening. And I was like, no, my hands and feet just like water balloons. I just, I can’t go any further. Oh God, I’m getting teary eyed just thinking about it. Um, and, you know, I had to stop and get a cold drink and put my feet up for a while and my husband had to go get the car from where we parked and pull up to the closest spot possible. And it was really hard. So, you know, again, once I got the diagnosis and I saw that that was a symptom that could possibly happen, it made me feel better because I knew there was a reason.

Brian:    Right.

Lupe :    Have you had issues with glasses, contacts or eye surgery?

Andrea: Well, I actually had Lasik, like three or four years ago. And uh, because I couldn’t wear contact lenses anymore because my eyes were dry. But I didn’t know what was causing it at the time. I thought it was contact lenses that were causing my dry eyes. And I didn’t want to have to wear glasses all the time, so he had Lasik. And it didn’t last because my eyes continued to be dry. And the dry eyes affected my eyesight. So, um, and then when I had the Uveitis, it affected my eyesight, um, to the point where I’m now back in glasses again. So little did I know.

Brian:    Have your doctors talked about any medications for the Edema?

Andrea: Uh, no. They just, you know, not yet. Right now I’m on the pilocarpine to help with the moisture in the mouth. And I am also on a Plaquenil, which is a… It’s a milder, autoimmune suppressant. Autoimmune suppressant drug. So I’ve just been on that one for a little over a month now. So I’m not quite sure if I’m seeing the benefits from it yet, a little bit. My joint pain used to wake me up in the middle of the night, every night. And now it’s less often. It wakes me… It still occasionally does wake me up, but I’m less often than it used to.

Andrea: I feel like I have a little more energy during the day than I used to. But I think we’re just… because I’m still only a few months into this, I think we’re kind of taking it one step at a time. You know, it’s like, I feel like every time I go to see the doctor she says, what is the symptom that’s bothering you the most? And we address that and she doesn’t want to give me too many medications all at once. You know, it’s like, let’s try this one and see how it goes. And if we need to we’ll add another one. So now I have two. You know, we’ll see how it goes from there.

Lupe :    They say that Plaquenil takes a few months to kick in. `

Andrea: Yeah. So like I said, it’s only been, um, maybe about six or seven weeks, that I’ve been on it now. So like I said, I’m not quite sure if I’m seeing the full effects of it yet. You know, we’ll go from there. Next time I see the doctor we’ll evaluate how well that one’s working and see if we need to replace it or add something else.

Lupe :    And how often do you see the doctor?

Andrea: Uh, once every couple of… once every two or three months. Um, I think the first time I saw her I saw her again a month later. And then last time I saw her, she said, okay, let’s, let’s wait a couple months. Let’s give it a couple months to see how this next prescription does before I see you again. So, and then of course she always says if any questions come up in between or if you feel like this really isn’t working, just call and we’ll evaluate from there.

Lupe :    That’s awesome. Sounds like a great doctor.

Andrea: Yeah. Yeah, she is.

Brian:    Are you experimenting with any holistic approaches for any of the symptoms?

Andrea: Well, I am taking several different, uh, like over the counter, you know, dietary vitamins and supplements. Um, I am not sure if any of them are helping. Um, I take calcium with magnesium and zinc. I had heard magnesium might help. Um, what else? Yeah, mostly just the regular vitamins, but instead of taking like a one a day tablet, I’m taking them separately. Like a B Complex vitamin and Vitamin D, which I up a little bit from the normal, um, because I was also found to be vitamin D deficient. And then I take the Vitamin C on its own. And let’s see what else. Oh, I just, I have, um, you know, other prescriptions that I’m still taking for my chronic migraines, preventative for those. But yeah, other than just vitamins and supplements and the diet, that I’ve been on. Um, not really. Um, I haven’t looked into anything beyond that.

Lupe :    I recently introduced turmeric and ginger to my diet. I find that helps me.

Andrea: Turmeric? What does that help with exactly?

Lupe:     Inflammation.

Andrea: Okay.

Brian:    Yeah, they’re both anti-inflammatory or say to have anti-inflammatory properties. And in the last, I don’t know, month or so, I’ve heard less complaints about joint pain from her and it’s ginger turmeric, black pepper, Cayenne pepper, thyme.

Andrea: Okay.

Brian:    We’ll make teas or put it in shakes or when I’m cooking something that can tolerate those spices, I’ll cook with them pretty heavily. And it seems to be… and the thyme tea in the morning actually smells awesome.

Andrea: Oh really?

Lupe:     Is that the one that’s helping produce saliva? I don’t know which one it is, the thyme? And I just, I have so much saliva. I don’t know what to do with, you know, because I’m not used to it, you know what I mean, just how you said.

Andrea: Right, right. Yeah. That is… You don’t know how much you missed it.

Lupe:     Yeah.

Andrea: Till you get it back again. Yeah, exactly.

Andrea: Well I do a little garden in my yard where I’m growing, um, basil, paragon and Rosemary, so I could absolutely add some thyme to the that. And a ginger root is always a nice thing to keep in the house. I could definitely try some of that too. And then you said Turmeric?

Lupe :    Yes. Yes. And I putting that in my… in my shake in the morning, first thing. You know, cause we have trouble swallowing pills, at least I do. So I like to take all my supplements and everything and I put them, I put everything in a shake and I’m done for the day. But yeah, it’s been helping me tremendously.

Andrea: Turmeric?

Lupe :    Yeah

Andrea: I’ll to look into that one for sure. So what kind of flavor is turmeric? Like what, what kinds of foods would you typically see that in

Brian:    Curry’s.

Andrea: Oh, okay.

Brian:    Are pretty heavy in Turmeric. And it’s gonna stain, whatever you put it in an orangy color.

Andrea: Right?

Brian:    So if you’re one that doesn’t like the look of foods, then you know, keep that in mind. But, it has flavor to it, but I think we’ve both been accustomed to… t’s a protein shake. I’m not sitting down to a four course meal to enjoy the flavor.

Andrea: Right, exactly.

Brian:    Let’s just get this shake in the morning and be done with it.

Lupe :    But it’s not bad. I don’t think it’s a terrible flavor. I’ve taken pictures of my shakes and I’ve sent them to my sister and they say, oh, that looks like pineapple. It doesn’t take like pineapple, but you know, it’s not bad.

Andrea: I, um, I typically have a protein bar for breakfast. I found some gluten free protein bars that I really like. I just typically have one of those for breakfast and then we have a salad bar. I’m lucky enough to be at a school that has a really healthy lunch option. So I pretty much take, um, you know, just fresh fruits and vegetables and some hummus and that sounds like something that I could sprinkle in the hummus pretty easily… that flavor. It sounds like it would be compatible. This year’s Thanksgiving dinner, we’ll have to feature some turmeric.

Lupe :    That’s right.

Brian:    Yeah. Turmeric in the gravy, probably wouldn’t be too bad.

Andrea: Yeah.

Brian:    I mean, you’re, you’re newly diagnosed with Sjogren’s. When you first heard… what was the psychological impact for you? Did it bum you out or was it just, okay, this is the next hurdle and let’s march on?

Andrea: You know, my husband did mention to me that after… I’ve been through some, some other medical issues. I actually had cervical cancer five years ago and um, I had back surgery in my early 40’s for arthritis and bulging discs in my back. And then this came up and he’s like, you know, you’re… it’s amazing how you just kind of take these things in stride and go, okay, you know, this is what it is and let’s, let’s go, let’s move ahead. Let’s deal with it because, you know, by the time we got the diagnosis, like I, I was so happy to know what it was and so happy to know why all these things were happening and why I was having all these symptoms and it started. It made sense. So, um, you know, the next step was, okay, let’s find a doctor and let’s see how we deal with this.

Brian:    That’s awesome!

Andrea: I wasn’t gonna just sit around and be like… oh poor me. Woes me. Everybody feels sorry for me. I want to live my life as best as I can, for as long as I can. And you know, whatever it takes to do that, I’m ready. So, I don’t know. I think I’ve always had kind of a optimistic outlook on life in general. My kids said sometime it’s annoyingly, so.

Brian:    You’re a perfect fit to what we’re trying to build with Sjogren’s Strong, is that yes, this is unfortunate. However, you know, I can still live that active, healthy lifestyle, so that’s awesome.

Andrea: Yeah. Actually, something I wanted to share with you guys was, last February… I’ve been a singer my whole life. I started out as a music teacher. I’m not a music teacher anymore. I’m still a teacher. I’ve been singing my whole life. And I did a lot of musical theater before my kids were born. And I finally decided, you know, I want to get back into this singing thing. And I… Last February I went up to LA and I auditioned for America’s Got Talent and I brought a couple big bottles of water with me. And I got there around noon. By the time I got to my audition, it was about 7:30 in the evening. It was a really long process. And my two bottles of water were long gone. And I had gotten into a room that wasn’t near a drinking source, a water source. And by the time I got to sing, my throat was really dry and sore.

Andrea: My mouth was completely dry. I hadn’t been diagnosed yet. I didn’t know what was happening and I just know that I was really disappointed with how I did. With how I sang. And um, so I feel like now that I have this diagnosis… Because, you know, when I first started reading about Sjogren’s, I thought, well, you know, lack of saliva and increased amount of stomach acid is also a symptom. And I’m like, it’s eroding my vocal chords. Am I ever going to be able to sing again? So that was one of the first things I asked my doctor about and she was like, yep, we’re going to get you there. So I’m doing it again this year. So I’ve just signed up to go back up in February and audition again. And this time I am planning on being a lot more prepared.

Brian:    Four water bottles.

Andrea: Well, yes. And I signed up for an early morning time. So there’ll be less wait time, I think, uh, in the morning and I’m just going to make sure I have a backpack full of supplies, to keep me going and uh, hopefully things will go a little bit better.“

Brian:    Definitely

Lupe:     That’s exactly. Fingers crossed.

Andrea: And I’m hoping also to, you know, tell them my story with Sjogren’s. And maybe even be able to use that as a platform to get some awareness out there to people about what it is. And um, I think there’s probably a lot of people and everywhere around the world living with symptoms and having no idea what it is. Just thinking it’s just their life or that, you know, this is there life now and that’s just how they’re… what they’re going to have to deal with. They need… people need to know that things can be better. That there are answers out there.

Lupe :    Yeah. Once you have a diagnosis, you could start working on, you know, getting better. So yeah,

Andrea: Absolutely.

Brian:    You know, and it seems like so much of how we feel has to do with what we’re consuming or putting inside of our body. And it seems like every time we learn something, we’ll give it a try and it either… We feel there was an effect or we feel there was no effect and we move onto the next thing. But it seems like every time we find that that puzzle piece that does help a little bit, we get to go the next mile of the road a little more comfortably looking for that next puzzle piece and hopefully it all comes together.

Andrea: Exactly. Yup. I agree. You know, like I said before… with my doctor, how we just have to take it one step at a time and not try to just throw everything on it all at once, you know. Um, because then you don’t know what’s working and what isn’t. You know, try one thing at a time, see how it works and then move on from there.

Brian:    Right, right. You got to definitely take it slow.

Lupe :    What advice, if any, do you have for, you know, our listeners, anybody who’s out there listening,

Andrea: If you’re suffering from symptoms and you don’t have a diagnosis, you know yourself better than anyone else. And don’t let anybody tell you that there’s nothing wrong with you, when you know that there is. Be persistent. Ask for certain tests because I think, um, a lot of the tests that I had aren’t ones that they would typically run. Yeah, this doctor was like, okay, well autoimmune… I guess we’ll just test for everything autoimmune. Um, but a lot of doctors wouldn’t think to test for Sjogren’s. So be your own advocate when no one else will be, you know. Just know that there’s hope once you have a diagnosis. That there’s a lot that can be done and it’s reassuring to know that, um, you know, this isn’t life threatening. Once you know what’s wrong, you can deal with it, you can live with it.

Brian:    What physical activity are you able to maintain at a level that you feel is still keeping your body strong with your symptoms that you’re currently experiencing?

Andrea: I do a lot of stretching, especially for my joint pain. I find that that helps a lot. Um, so I’m trying really hard to keep flexible. Um, and I think, you know, as we get older, that’s important anyway, even if you don’t have an autoimmune condition. Flexibility, lack of flexibility is something that plagues elderly people all the time. I do things to help with balance, a little bit of relaxation, yoga kind of things, you know. That helps with stretching and strength.

Andrea: My job, I’m a special education teacher, so I work with children all over the school campus, so it keeps me moving. So it keeps me walking and I try, even though I can’t walk a lot for long periods of time, I try to get in at least 5,000 steps a day. I know that they say some people say 10,000, but in my case I’m pretty happy with at least 5,000 a day. Um, I think it’s just important to just to not be sedate, you know, to keep moving. Keep your body going.

Lupe:     Correct.

Brian:    Definity

Lupe:     I’ve been told that Plaquenil, you become sensitive, very susceptible to infection, working with kids. Do you find the same?

Andrea: Well, I keep a bottle of moisturizing hand sanitizer on hand, so I use that a lot. Anytime I’m with kids who have particularly dirty hands or runny noses or they’re coughing.

Lupe:     Yes.

Andrea: Yeah. So have my moisturizing hand sanitizer, because my skin tends to be dry. I’m just careful to take care of myself and you know, wash my hands a lot. And get plenty of rest, you know, the extra vitamin C and the calcium with magnesium and zinc. Those are all boosters to help with those kind of germs. Um, and anytime I feel something coming on, I do take a sick day. Like I said, luckily I’ve only had two so far this year. But I don’t want to be one to wait until I’m really super sick. Take a sick day… If I feel it coming on, take a sick day, drink lots of liquids, get a lot of rest. And that will usually knock it out of my system before it has a chance to take hold.

Lupe :    Correct, yeah. Yeah.

Brian:    That’s one thing when Lupe gets sick it seems… I mean if I get even a slight cold, we’re quarantining each other two separate parts of the house and it’s right because… If she gets that cold that, I might deal with for four or five days… it takes her body a lot longer to deal with it than mine and she’s down pretty hard, so.

Andrea: Yeah. Yeah, yeah. Like I said, as soon as I feel anything starting to come on, I try to take care of it immediately before it has a chance to come out full blown.

Brian:    So with the research that you’ve done, are you finding it hard to find information that you feel is helpful? Or do you feel the Internet is providing enough information that’s coming up in search relatively easily that’s pertinent to you?

Andrea: Well, the Sjogren’s Syndrome Foundation website, I’ve found a lot of good information there. And I’m actually finding a lot of good information on some of the Facebook support pages. Just from other people who have been diagnosed with Sjogren’s, who’ve been dealing with it longer than I have, you know. Just asking questions of other people and saying what has worked for you? Have you tried this particular drug, Have you tried this particular, you know, remedy and how has it worked for you? I’ve been finding that that’s a really great place to share. So it’s not so much finding articles or that kind of information, but just sharing with other patients, who’ve been dealing with it. It’s kind of like not having to reinvent the wheel. You know, where there are so many people out there.

Brian:    Yeah, no, definitely. Unlike yourself being so giving of your time right now, spending it with us and us putting this back on the Internet, we found a lot of great information and met some awesome people, like you on groups, on social media platform. So that’s an awesome. Well, is there anything else you would like to say to the listeners to give them a little bit of encouragement before we end?

Andrea: Oh my goodness. I guess, you know, I’m still fairly early on in my journey, but because I have a hold on it now and I know what I’m dealing with. Um, I feel positive and I think that, you know, like I said before, anybody who’s dealing with these symptoms, who thinks that this might be what they’re dealing with, be your own advocate, get out there and try things. Even if you’re not with a Rheumatologist yet. Uh, there are diets, there are exercise, other things that you can do for yourself to improve your quality of life. And that’s really what it’s about with Sjogren’s, is quality of life, not quantity. Because you know, we’re not looking at something that shortens your life. Yeah, there’s no sense of dread with this that, oh, you know, I only have five years to live that. Nothing like that. So we’re basically just looking at quality of life and there are so many things out there for us that we can do. And like I said, with the gluten free diet, that I’ve been doing, gluten free has become so mainstream now that there are great foods out there. There’s pasta made of brown rice flour that tastes just like any other pasta. I haven’t had to give up spaghetti.

Lupe :    Oh good.

Andrea: You know, there’s gluten free pizza crust made out of cauliflower, that’s delicious. I feel healthier inside because of the way I’m eating now. So there are so many things that can be done to help you with that quality of life. And you just have to keep going and know your own body because you know it better than anyone else.

Lupe:     Right. Right.

Lupe:     Don’t give up. Listen to your body, I always say that.

Andrea: Yes, absolutely.

Lupe:     Andrea, we want to thank you for sharing your story. We feel it’s important to learn from each other’s journey because even if we only learned one thing from one another, that helps improve our quality of life, then it’s time well spent.

Lupe:     Her positive attitude towards finally having a diagnosis is allowing her to effect a positive change and it’s truly “Shining a Light on Sjogren’s.

Lupe:     If you’d like to share your story, please reach out to us on Facebook or Instagram and be sure to like and follow. Till next time, SIP CONSTANTLY AND STAY HYDRATED!

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Sjogrens Strong episode 7, Andrea's Story


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