Sjogren's Strong

Introduction

Common Symptoms of Sjogren’s Syndrome

Lupe & Brian review the survey conducted by the Sjogren’s Foundation and talk about each of these symptoms and how they affect life.

Common Symptoms of Sjogren’s Syndrome

Lupe & Brian review the survey conducted by the Sjogren’s Foundation and talk about each of these symptoms and how they affect life.

Lupe & Brian: [00:00:00] Welcome to another episode of Sjogren’s Strong.

[00:00:03] Brian: [00:00:03] This is Brian.

[00:00:04] Lupe: [00:00:04] And this is Lupe.

[00:00:05] Brian: [00:00:05] And this is your podcast discussing how to live an active and healthy lifestyle, despite a diagnosis of Sjogren’s.

[00:00:11] Lupe: [00:00:11] And I want to start off by thanking everybody, the listeners, the followers. Our audience is growing, our social media, Facebook, Instagram, Twitter, even YouTube is growing. We appreciate you so much. Love, love you guys.

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[00:00:28] Brian: [00:00:28] And for those of you who didn’t know, we have a YouTube, it’s the audio show with the cover image. You don’t get to see us bantering because she’s a little camera shy.

[00:00:37] Lupe: [00:00:37] Ha! Ha! You know what, maybe one day I’ll be like, you know what, let’s do this. Let’s go live. Let’s, you know.

[00:00:43] Brian: [00:00:43] You’ve said  it a couple of times.

[00:00:45] Lupe: [00:00:45] I just say it though.

[00:00:46] Brian: [00:00:46] You’re inching your way towards doing some video.

[00:00:49] Lupe: [00:00:49] You know what? I see a lot of people doing it and I dig it, but, um, I don’t know.

[00:00:55] Brian: [00:00:55] She’s scared.

[00:00:56] Lupe: [00:00:56] I don’t know. The voice is one thing, right. But actually, putting yourself out there, your face and everything. I don’t know.

[00:01:02] Brian: [00:01:02] She’s scared.

[00:01:03] Lupe: [00:01:03] I am scurred.

[00:01:04] Brian: [00:01:04] Hey, and Instagram, we are almost at 2000 followers, which we are super excited about. Lupe puts a lot of time and energy into creating posts and memes. It’s awesome to see that platform grow as much as it has. So, if you do not follow us on Instagram, open it up Sjogren’s Strong.

[00:01:26] Lupe: [00:01:26] That’s correct.

[00:01:28] Brian: [00:01:28] And give us a follow, give us a light scroll back through some of the old memes. There are some cool images in there. A lot of the images she is taken herself and then  meme-afide them.

[00:01:40] Lupe: [00:01:40] Yeah, most of them.

[00:01:41] Brian: [00:01:41] But there’s some good information there as well. But we appreciate you on any social platform that you follow us and interact with us on, and don’t be shy, introduce yourself.

[00:01:52] And the Facebook group I need to start letting people in sooner because I’m letting in 15 plus people a week. I usually let people in on Wednesdays when we drop an episode, that’s my Sjogren’s admin day. But I think I need to pick that up.

[00:02:07] Lupe: [00:02:07] I think you do, because there’s always like 15, 20.

[00:02:10] Brian: [00:02:10] We don’t want to leave anybody waiting.

[00:02:12] No way! No way!

[00:02:14] Uh, a little update, we actually attended a wedding over the weekend.

[00:02:19] Lupe: [00:02:19] Yes, we did. It was my brother, Jimmy, and it was so much fun.

[00:02:23] Brian: [00:02:23] I was really, really worried because in my mind, we should prep for an outing like that. Like we prep for a hike and she wasn’t really prepping. And then. Friday, she took off work. She helped set up. She was out too past midnight, moving tables and decorating and doing all kinds of craziness. And she comes in late and we’ve got to get up the next day for the wedding. And I’m like, there’s going to be alcohol and family and just all of that dynamic.

[00:02:55] And this clever one, I caught her taking a shot glass and pouring water in it and doing her cheers, to avoid consuming too much alcohol.

[00:03:06] Lupe: [00:03:06] You know what? I did take two shots with the bride and the groom, and then with my parents and my family and everybody. But then they wanted to keep drinking. So, I kind of just, you know, behind my back and I filled it with water. Yahoo! and they just think I drank so much.

[00:03:24] Brian: [00:03:24] And you know, I’m in reserve kind of sitting back, watching everybody, everything. And I see her over there cheering. I’m like, Oh my God, that’s like #4. Oh my God, that’s a #5. Tomorrow’s going to suck. Good thing. It’s Sunday. But then I went up to grab a drink myself of a sparkling Apple cider, and I caught her poured water into a shot glass. I’m like, yeah, good girl.

[00:03:52] Lupe: [00:03:52] My brother, Carlos, he accidentally took my shot of water and he’s like, Hey, somebody switched this on me, but man, was it refreshing?

[00:04:03] Brian: [00:04:03] Um, but then Sunday we were still kind of hurt.

[00:04:05] Lupe: [00:04:05] Yeah. So, congratulations to the bride and groom. So excited, COVID wedding.

[00:04:10] Brian: [00:04:10] Her baby brother got married.

[00:04:12] Lupe: [00:04:12] You know, hand sanitizer, it was so cool, you know – COVID wedding.

[00:04:16] Brian: [00:04:16] You know, and it’s really cool to see your family get together. It reminds me when my family used to get together back when I was in high school. And it’s good to see your brothers that I hadn’t seen in a while and your sisters. And it’s really cool to see them come together as a family unit, because you can tell that they’re just so close and.

[00:04:35] Lupe: [00:04:35] Well, no, we haven’t even really seen each other since all this COVID-19 started. This is like our first real get together.

[00:04:43] Brian: [00:04:43] And stay away from us for a couple of weeks. Cause you know, we started with masks on and that kind of went downhill.

[00:04:50] Lupe: [00:04:50] Always.

[00:04:51] Brian: [00:04:51] Um, but I mean the party thinned out pretty fast. The attendance wasn’t quite what they had expected, but we kind of expected that.

[00:05:01] Lupe: [00:05:01] No, I think it was what they had expected. I mean, everybody showed up for the ceremony and then, you know, people kind of thin out. And then at the end, it’s usually always immediate family, which is the best part.

[00:05:13] Brian: [00:05:13] Right! That’s when the hair really comes down.

[00:05:15] Lupe: [00:05:15] That’s right, kick off your shoes, let your hair down.

[00:05:18] Brian: [00:05:18] Dancing and mariachi.

[00:05:21] Lupe: [00:05:21] Oh! Two mariachis! Oh, check this. This is so funny guys. This is so funny. Not one mariachi showed up, two mariachis showed up because they both wanted to surprise each other. So, the bride got a mariachi, wanted to surprise the groom? And then the groom wanted to do the same. So then two mariachis show up at the same time.

[00:05:40] Brian: [00:05:40] And what are the odds at the same time? And they’re looking at each other like, huh.

[00:05:43] Lupe: [00:05:43] What are you doing here? I got hired. No, I got hired. So anyways, one of them was in black, the other wasn’t white. So, they kind of just, you know, played together it was cool.

[00:05:54] Brian: [00:05:54] Yeah. Both mariachis in harmony.

[00:05:56] Lupe: [00:05:56] There was like 20 of them.

[00:05:58] Brian: [00:05:58] Jumped in and played together, which was really cool.

[00:06:01] Lupe: [00:06:01] Yeah. it was fun.

[00:06:02] Brian: [00:06:02] Which was really cool. It was a good time. Um, but then yeah, Sunday we were kind of both hurt. We slept in and then we ate and then we took a nap and then we ate and then we took a nap.

[00:06:13] Lupe: [00:06:13] And then we ate again and. took a nap.

[00:06:15] Brian: [00:06:15] And went to bed. And I think it was more fatigued than hung over.

[00:06:21] Lupe: [00:06:21] I wasn’t hung. I was just tired.

[00:06:23] Brian: [00:06:23] I did have a headache, but it wasn’t a hangover headache. I think it was just all the sugar. I was consuming with the sparkling Apple cider. And I had a couple of cups of soda and I would mix in with water. They’ve got one of those seltzer water makers and I was drinking water. But I think I just consume too much sugar and that was the cause for my headache. Cause I wasn’t nauseated or hung. I just had a headache.

[00:06:46] But enough about that stuff. What are we talking about today,  Ms. Lupe?

[00:06:50] Lupe: [00:06:50] We are going to be talking about the 10 Most Common Symptoms with Sjogren’s.

[00:06:55] Brian: [00:06:55] Yeah. And if you don’t follow or aren’t a member of the Sjogren’s Foundation, we highly encourage you to because they do so much good. It’s not all that expensive, what’s it cost?

[00:07:11] Lupe: [00:07:11] $40

[00:07:12] Brian: [00:07:12] $40 a year. You get their newsletter with a lot of great information. Um, you get information about events coming up, the support groups. And the fund raising they do to fund research is just so important to everybody with Sjogren’s and everybody who is going to follow in our footsteps that get Sjogren’s. Um, but they did a survey.

[00:07:39] Lupe: [00:07:39] The survey was like I said, common symptoms experience almost weekly or more frequent.

[00:07:47] Brian: [00:07:47] Let’s start at the bottom.

[00:07:49] Lupe: [00:07:49] So, at 10 brain fog came in at 57%.

[00:07:55] Brian: [00:07:55] So 57% of those who answered this survey said they experienced brain fog almost weekly. How does that rate with you?

[00:08:04] Lupe: [00:08:04] You know what I’m the same way. Some days are worse than others. I don’t know what causes that. Maybe it’s how tired you are. The sun, the heat, what you eat. I mean, who knows?

[00:08:17] Brian: [00:08:17] I think you’re doing a better job  just going, yeah, my brain’s not right, I’m going to do this, that doesn’t require communication or thought. Just sitting there looking through pictures or on your phone or taking a nap or let’s put on a movie. That way we can sit in silence together and you don’t have to worry about dealing with the brain fog. Would that be a true statement?

[00:08:43] Lupe: [00:08:43] I think you’re actually right. You know, me too. Well, you know, when I started using words like thingy or the whatchamacallit over there. I know I’m struggling with my words. And like I said, I don’t know what’s triggering it. But yes, you’re right.

[00:08:58] Brian: [00:08:58] And, and I remember in the earlier days of your diagnosis, the  brain fog was one of those things that probably scared you the most.

[00:09:06] Lupe: [00:09:06] I thought I had early signs of Alzheimer’s. I thought, oh  my God, I’m too young. I’m going to forget everything because the words weren’t there. I didn’t know how to communicate. Not only that, but I wasn’t retaining anything. So, I remember I was at work and I used to jot everything down, every single word and then.

[00:09:27] Yeah, it was pretty scary. And my words, I used to use the wrong tense when I used to talk to people. And that was kind of embarrassing. Cause I knew I was doing it, but I didn’t know the right tense.

[00:09:38] Brian: [00:09:38] Yeah. Yeah. Well, it’s good that you’ve come up with coping mechanisms if you will, to mitigate that fear., you know what it is, you know, when it’s coming and you know how to kind of skirt around it to avoid any embarrassment if you have to be in a social situation,

[00:09:55] Lupe: [00:09:55] And then you’re speaking, mid-sentence you forget, what was I saying? I lost my train of thought. No idea. That’s why, when I’m talking to Brian and I need to get something out right away, I just interrupt him mid-sentence, whatever he is saying. And I just spit out what I have to say.

[00:10:12] And he’s like, oh gee, thanks it’s not like I was saying anything, but at the beginning, that’s how it was. But I’m like, okay, I’m coming across as rude. Cause I’m just interrupting him. So, one day I just said, look, I know this is what I’ve been doing. And, but this is why. And he understood.

[00:10:29] Brian: [00:10:29] Yeah. I mean, it was something I had to learn and realize. So now sometimes I’m talking and she’s like, Hey, and I’ll shut up. And then she starts talking and then I forget what I was saying. It would be interesting to be a fly on the wall when we’re trying to have a conversation.

[00:10:46] Lupe: [00:10:46] It’s  so funny. But you know what I mean,  you don’t forget what you’re going to say most of the time, but, um, I do really appreciate it. Cause sometimes I just need to say it right away. Cause I know it’s going to leave my brain.

[00:10:59] Brian: [00:10:59] And #9 on the list was forgetfulness and I kind of clump this in with brain fog and forgetfulness 60% of the people that took the survey said that they experienced this almost weekly. So, 57% brain fog. 60% forgetfulness.

[00:11:13] Lupe: [00:11:13] But what’s the difference between those two, really.

[00:11:16] Brian: [00:11:16] Well, brain fog is not being able to compose thoughts.

[00:11:19] Lupe: [00:11:19] Articulate. Yeah.

[00:11:20] Brian: [00:11:20] Where forgetfulness. you just forget  something.

[00:11:22] Lupe: [00:11:22] I mean.

[00:11:23] Brian: [00:11:23] Like forgetting where you put your phone.

[00:11:25] Lupe: [00:11:25] Oh, my God. Sometimes it’s in my back pocket, my glasses on top of my head, but you know what? I don’t think that Sjogren’s related. It’s just one of those things we all do. But, um, do I forget to do things? All the time. So, I mean, I’m guilty of that. I have forgetfulness too.

[00:11:42] Brian: [00:11:42] I mean, and I also think that that’s an aging thing, as well.

[00:11:46] Lupe: [00:11:46] Well, you know, maybe for you, because I don’t age.

[00:11:48] Brian: [00:11:48] Ouch.

[00:11:50] Lupe: [00:11:50] And # 8 is dry nose, that came in at 63%. Do I have dry nose? Absolutely, I do. Especially when it’s, a couple of things, right. Especially when it’s really hot. When I hadn’t been yet drinking too much water or should I say enough water? Um, but my nose gets really dry to the point that it’s hard to breathe and it starts cracking inside. So, it starts bleeding, not like gushing out blood. Right. But it’s bleeding. So, yeah.

[00:12:28] Brian: [00:12:28] Yeah. So, we’ve mitigated that with some of the nasal gels. The gels coat, and they last longer than the sprays. Um, and not necessarily a sinus spray cause that’s meant to dry you out. But like Xycam makes a great nasal gel that we always have in the house.

[00:12:46] Lupe: [00:12:46] Remember one time I had a cold or something several years ago and the doctor gave me some, a spray. And I didn’t know I had Sjogren’s at the time. And, and this spray really dried me out to the point where my nasal, whatever was hurting a lot. And then it started bleeding and I was like, what the heck was going on? And I stopped using it, not knowing that I had Sjogren’s. But, uh, yeah, I don’t use that anymore. But it’s the nasal spray and I don’t know the brand of the gel, but it really works.

[00:13:22] Also, really quick, one more thing, um, if I’m out and about, and I don’t have any of those things with me, uh, I just get like a hanky or a paper towel and I put water on it and I just kind of hold it up against my nose. And that helps me.

[00:13:38] Brian: [00:13:38] Yeah. Getting that moisture in there, that humidity. All right. #7 is joint pain with 64%.

[00:13:46] Lupe: [00:13:46] I think I have joint pain more than 64% of the time. Um, every day I have joint pain, every day daily.

[00:13:55] So you experience this daily.

[00:13:56] Absolutely. Yeah. And joint pain every day. My left shoulder, uh, recently it’s been my right knee. I’m kind of gimping, you know. Um, but as my body warms up, it gets better. But if I’m sitting for a long time, uh, yeah, I do get it daily.

[00:14:15] Brian: [00:14:15] And we’ve mitigated this with heating pads. We’ve mitigated this with icy hot Tiger Balm and recently adding CBD to the mix. It’s probably been the biggest help when you need do apply something.

[00:14:30] Lupe: [00:14:30] Yeah, that’s correct. And yesterday I was going to call her text and I didn’t, and I meant to tell you that maybe I want to get a knee brace, but the pain is not severe all the time.

[00:14:42] I think maybe yesterday, because I was on my feet over the weekend, too much, you know, dancing, partying around. Cause I’m such a dancer. Um, it was really bad. And I thought knee brace, maybe that will help?

[00:14:53] Brian: [00:14:53] No.

[00:14:54] Lupe: [00:14:54] No. So, don’t spend my money on knee brace.

[00:14:56] Brian: [00:14:56] No.

[00:14:57] Lupe: [00:14:57] Okay. Veto.

[00:15:01] Brian: [00:15:01] Next on the list is trouble sleeping. Now this one, you kind of think as what I’ve Sjogren’s I sleep all the time, but it’s not enough consecutive hours or as deep of asleep. And I think Lupe experiences this quite a bit. It’s seldom or she’ll sleep for eight hours straight, restfully.

[00:15:24] Lupe: [00:15:24] Sunday night I slept through the night. Did not wake up one time. I was so tired. But okay, so I have fatigue. Yes. I have fatigue. Yes. I’m tired all the time. And I could probably take a nap on demand during the day, but at night, I just can’t fall asleep. And it doesn’t matter if I’m tired and it doesn’t happen every night, but most, mostly, most nights.

[00:15:49] Brian: [00:15:49] Yeah. Sure. If you ever want to talk with her, hit her up on Instagram in the evening,

[00:15:53] Lupe: [00:15:53] I’m telling you. I’m telling you I have trouble falling asleep. A lot of people, a lot of listeners, um, followers, they said Melatonin. Um, my girl. Kristy,  she recommended Dr. TEALS foaming bath, and it’s comes with Melatonin and essential oils.

[00:16:14] And I couldn’t find it, after she had recommended it to me, I couldn’t find it for a while, but then I went to a different Target and I found it there. Not only that, but I also found lotion with melatonin and I haven’t really used it. But I can’t wait to use it because. I want to know how the melatonin is going to work in the lotion. Cause in the bath, right, it’s going to relax you. I know that.

[00:16:40] Brian: [00:16:40] Well, it’s not just relaxing. It’s the melatonin getting into your bloodstream. Melatonin is the chemical we produce when it’s time to go to sleep.

[00:16:46] Lupe: [00:16:46] I know.

[00:16:48] Brian: [00:16:48] Once upon a time you used to have an evening routine.

[00:16:51] Lupe: [00:16:51] What was that?

[00:16:52] Brian: [00:16:52] To where it was getting your PJ’s. You would wash your face. You would get your sleepy time tea. You’d cut it up under your blanket. And that’s kind of gone.

[00:17:03] Lupe: [00:17:03] Well, I’m always in my PJ’s now.

[00:17:05] Brian: [00:17:05] You woke up in your tennis shoes this morning.

[00:17:09] Lupe: [00:17:09] Well, because that way, when I get up, I’m ready to go. I don’t need to get ready. You know what? That’s really bad, but it’s true. I mean, look,  I’ve been wearing workout clothes and yoga pants and you know, shorts. So that’s what I sleep in. And my tennis shoes. When I get up in the morning, I’m ready to go. I don’t have to do anything.

[00:17:28] Brian: [00:17:28] She crosses the street and goes for a walk.

[00:17:31] Lupe: [00:17:31] That’s crazy.

[00:17:32] Brian: [00:17:32] Now this is something you do experience. And most people do, from what the people we’ve spoken to, I should say. And we’ve talked about. bed yoga. When you first wake up is doing some stretches and some routines to fight morning stiffness, which comes in at 69%.

[00:17:52] Lupe: [00:17:52] I have morning stiffness every single day, every morning. And my stiffness is so bad. It’s to the point that I feel like a board. Okay, and this is the only way I know how to explain it in my words. I feel like a board, I can’t move my limbs and I kind of just have to rock myself from side to side until like my body warms up a little bit. It just aches to move, a lot. And my joints are so stiff. And sometimes I have to ask Brian for help. Brian, could you just get me out of this position? Cause I can’t move

[00:18:31] Brian: [00:18:31] And how dare she get upset when I come running in and jump on the bed and dogs are following and they think it’s played time and she’s all stiff.

[00:18:40] Lupe: [00:18:40] I’m like what is going on? That’s crazy.  You know,  doctor say, Oh, you know, you’re just getting old. No, I’m not just getting old. This  just didn’t happen overnight. It just getting more and more.

[00:18:54] But what we’re talking about, I actually posted it on Instagram, every platform, but Instagram gets the most love. That’s why Brian says it’s my baby, because I interact with a lot more people on Instagram and message. And you know, I’ve become really good friends with a lot of people. And a lot of people commented that they have morning stiffness every day.

[00:19:22] And I guess I didn’t realize, I’m glad I posted this because I didn’t realize that everybody experiences all these symptoms on the daily. It was an eyeopener for me. I’m definitely glad I’m not alone, but, uh, it’s not fun.

[00:19:38] Brian: [00:19:38] No, it’s not. You know, it’s like when we go camping for multiple evenings, every morning, you wake up a little stiffer than the night before. And we’re sleeping sometimes on just a sleeping pad in a sleeping bag, sometimes on an air mattress. But yeah, you know, and it’s like, you wake up, the dogs are in the tent with us.

[00:20:00] And they’ve got to go out and it’s not like, you know, they’re patient, they’re banging their head on the door, like trying to figure out why the dog door is not opening.

[00:20:07] Lupe: [00:20:07] They wait until they can’t wait anymore.

[00:20:09] Brian: [00:20:09] Then that’s when they wake us up, then you’re all like, Oh, I need to get up and get them outside. Cause having an accident in the tent  would suck.

[00:20:17] Lupe: [00:20:17] The first time we went camping, you and I, I think it was pre Sjogren’s and it was, I don’t know, two, three nights. And I remember the last night I’m like,  because I think it was a long trip, but. I don’t know, we still had two nights to go and I’m like, I’m done. I want to go home. I cannot. I’m done. Because yeah. It gets progressively worse.

[00:20:40] Brian: [00:20:40] Yeah.

[00:20:41] Lupe: [00:20:41] Because I mean, imagine if I sleep right now in a nice comfy bed and I wake up stiff, imagine sleeping on the ground, air pad, or even an air mattress. Cause it loses air throughout the night.

[00:20:52] Brian: [00:20:52] And plus we’re working harder when we’re camping. It’s not, you can’t go to the kitchen, you have to go to the cooler, open the cooler, you know, you’re working. Everything requires more energy when you’re camping. And I think that just exacerbates the situation and we become stiffer and stiffer.

[00:21:08] Lupe: [00:21:08] And speaking of kitchen and cooler, I’m going to tell you again, you know, those little mini fridges?

[00:21:14] Brian: [00:21:14] No, you’re not getting one by your recliner.

[00:21:16] Lupe: [00:21:16] I want one for the bedroom and by my recliner.

[00:21:18] Brian: [00:21:18] She wants it one by her recliner and one on her side of the bed.

[00:21:22] Lupe: [00:21:22] I’m like, come on. I just, I don’t want to get up for anything, just give it to me. Once I’m down. I’m down.

[00:21:27] Brian: [00:21:27] And next it’ll be, Papito, I need a microwave in the bedroom.

[00:21:30] Lupe: [00:21:30] That’s right and by my recliner too.

[00:21:33] Brian: [00:21:33] A little pantry. It’s like, this is a dorm room now.

[00:21:36] Lupe: [00:21:36] No, but just miniature size. So, I just reach for it.

[00:21:40] Brian: [00:21:40] That’s too funny. That’s too funny.

[00:21:44] Lupe: [00:21:44] And next on the list, coming in at #4 is dry or itchy skin. That came in at 76%, 76% of people experienced dry or itchy skin.

[00:21:55] Brian: [00:21:55] At least weekly.

[00:21:56] Lupe: [00:21:56] Me it’s on the daily. I have to just put on a lot of lotion and even then, my body soaks it in. And next thing you know, you know, I could scratch, and I have all this, what do you call it?

[00:22:09] Brian: [00:22:09] Dry skin.

[00:22:10] Lupe: [00:22:10] Dry skin, you know, flaky. Um, so yeah, and it does itch.

[00:22:16] Brian: [00:22:16] I remember the first time, in the Marine Corps, when we’d come out of the field, your feet are pretty jacked up and we would take a shower and we would try to get some dead skin off.

[00:22:26] But, I got in the habit of taking like a heel balm, lathering, my feet. I’m talking like a quarter cup of it per foot. It’s my foot is white, completely coated with heel balm. And then I’d wrap my feet in plastic bags. And just hang out, chill, blacks have a beer with your buddies, do whatever. And in 20 minutes or so it’s gone. It’s just soaked into your foot.

[00:22:53] So one day we’d come back from a long hike and I’m like, you know what? You need to try this. And we did it. And she was so amazed at how her foot just absorbed this caked on, can’t see skin heel balm.

[00:23:07] Lupe: [00:23:07] Just absorbs it. Like it disappears just (slurpy sound)  right away.

[00:23:12] Brian: [00:23:12] How was that (slurpy sound), right away?

[00:23:15] Lupe: [00:23:15] Um, I have, I think, most Sjogi’s do,  this discoloration on your face. Right. And it’s caused by the sun, but it’s because of the pills that we’re taking, the medication that we’re on. And they tell you to stay out of the sun, but c’mon, it’s impossible sometimes to stay out of the sun. And I love the sun and I love walking., so it’s hard for me,

[00:23:35] But because of that, I have all these spots and sunspots on my face, and I’ve been using a couple of products and I just kind of cake it on. Cause I think if I kick it on right, the spots aren’t going to go away. But my body just absorbs it. Like within five minutes of me applying it, it’s gone.

[00:23:58] I’ll do it in again. And I’m about half an hour and it happens again, you know, it’s just that dry. And I don’t know. I mean, regular people that don’t have Sjogren’s when you cake on the lotion, does your body absorb it like that? I don’t know.

[00:24:12] Brian: [00:24:12] You know, I’ve  never been one to use lotion daily. I use lotion on trouble spots, sometimes. For example, during the summer I’m in lighter shoes, sandals flip flops, and I pay more attention to my feet during the summer months. My left elbow, because I drive with it, hanging out the window, it just dries out and it gets scaly sometimes.

[00:24:37] And it’s not like I feel my elbow, so I don’t even realize it. But lately in the shower I’ve been taking a pumice stone to get all that dead, dry skin off of it. I mean, in right now I need lotion, but I’m just not that lotion guy. I don’t like feeling greasy.

[00:24:53] Lupe: [00:24:53] Uh, I don’t like feeling greasy either the product that I use, it’s not greasy because if I find something and it’s greasy, I stop using it. And you know what, that’s why I don’t like shopping at Bed Bath and Beyond. Is that it? Or is it called Bath and Body Works, whatever, see. I don’t even know the name. Because their product is really greasy and oily. And  I don’t like it.

[00:25:17] Brian: [00:25:17] Yeah, it’s funny. I look around my desk, I thought I had a bottle of lotion here to combat this elbow issue.

[00:25:23] Lupe: [00:25:23] Actually, sometimes you accidentally, kind of, tap me with your elbow and you cut me to the bone because it’s so dry.

[00:25:29] Brian: [00:25:29] Cut you open it.

[00:25:30] Lupe: [00:25:30] I’m like damn, that feels like sandpaper boy.

[00:25:33] Brian: [00:25:33] It gets, it gets crazy.

[00:25:34] Lupe: [00:25:34] Oh my goodness.

[00:25:36] Brian: [00:25:36] And it’s funny, it’s only my left elbow.

[00:25:38] Lupe: [00:25:38] That’s hilarious,

[00:25:39] Brian: [00:25:39] And I mean, I’m on my elbows all day. That sounds weird. My elbows are on the arms of my chair all day, you know, doing computer work. And ah, my left arm has to move to cover more ground to get from machine to machine. That’s strange.

[00:25:55] Lupe: [00:25:55] There it is.

[00:25:57] Brian: [00:25:57] Maybe I need to apply lotion to the arm of my chair.

[00:26:00] Lupe: [00:26:00] Oh, Hey, or wrap something on it, a cloth and pack it with lotion or wet it.

[00:26:05] Brian: [00:26:05] Oh, too funny.

[00:26:07] Lupe: [00:26:07] That’s hilarious.

[00:26:09] Brian: [00:26:09] So next on the list, fatigue. And fatigue comes in at #3 with 80%.

[00:26:18] Lupe: [00:26:18] That’s a lot of people.

[00:26:19] Brian: [00:26:19] That’s a lot of people.

[00:26:22] Lupe: [00:26:22] For me, it’s not only weekly, it’s daily. I have fatigue on the daily, every day. And it’s not all day, but it just kind of comes on. And the only way I know how to explain it to Brian is it just comes over me like a warm blanket. I cannot stop it. I feel it coming on and he’ll look over and he’ll look at me and he’s like, Oh time for a nap.

[00:26:49] And I’m like, what are you talking about? Oh, you have sleepy eyes. Like he knows me that well. But I didn’t think I had a tell but I do.

[00:26:57] Brian: [00:26:57] She’s got tells. I can easily tell when she’s upset with me.

[00:27:03] Lupe: [00:27:03] What are you talking about?

[00:27:04] Brian: [00:27:04] That one’s really easy.

[00:27:06] Lupe: [00:27:06] Yeah. That’s uh, one of my main complaints is definitely fatigue.

[00:27:12] Brian: [00:27:12] Yeah. Now tied for #1  and #2, and I’m sure you’ve guessed it. If you’ve been paying attention to what we’ve talked about, dry eyes and dry mouth, 92% of the people surveyed, experienced this almost weekly or more frequently. And I’m sure this is a daily for the majority of our listeners.

[00:27:36] Lupe: [00:27:36] Yes, dry mouth, dry eyes. Um, every day for me, I wake up in the, the morning and my eyes hurt because they’re so dry. And sometimes Brian will come to the rescue and, you know, he knows I’m waking up. So he’ll hand me a vial of my eyedrops and, um, you know, I keep my eyedrops in the refrigerator so when I put a drop in for sting in the morning, It is so refreshing.

[00:28:07] It really, it feels good in my eyes. Um, but uh, definitely dry eyes and dry mouth, every day. I have to drink a lot of water or oral spray. Um, try not to eat, drink sugary stuff, because my mouth feels sticky.

[00:28:30] And at the beginning, I didn’t know what that feeling was. You know, I’d be eating a lollipop or candy or whatever, and I’m like, my mouth feels sticky. What is that all about? And, you know, you come to realize what it is.

[00:28:41] Brian: [00:28:41] Now, the foundation did put dry mouth at #1 on the list, so I’m sure it had, you know, a few points of percentage just above dry eyes, but they both came in at 92%.

[00:28:53] And no better Segway for dry mouth than to talk about Lubricity just for a minute. For those of you have been listening, you know, they are a sponsor of the show. I’ve actually been using some of her Lubricity, don’t tell.

[00:29:06] Lupe: [00:29:06] I’m like,  where is it? Where’s all my products?

[00:29:08] Brian: [00:29:08] The studio, later in the week, I do a couple of shows and do a lot of talking. And I’m telling you what this stuff helps me reduce the lip smacks and all of that into the microphone, which is kind of cool,

[00:29:23] But right now, if you go to LubricityInnovations.com and use the promo code at checkout SS 30, you will save 30% on your order. And dry mouth is more than just Sjogren’s. A lot of prescription meds can cause dry mouth, diabetes, cardiac disease and treatments for cardiac issues, cancer treatments, rheumatoid arthritis, or Alzheimer’s Parkinson’s. There’s a  lot of different conditions that cause dry mouth. So, if you use Lubricity, you know how well it works. And if you know somebody that’s got dry mouth, for other reasons, recommend this product to them, let them use that promo code. You know, we don’t get anything extra if you buy or don’t buy, just help them relieve those symptoms because dry mouth socks.

[00:30:15] Lupe: [00:30:15] It really does. And you know what guys, don’t take it from me. Go try it, buy a small bottle at 30% off, a lot of followers on Instagram, I get feedback that it really works, they bought it, you know, they sent me private messages. And I say Instagram a lot, because like I said, most of the people, I interact  with, or they feel comfortable with, you know, posting is on Instagram, that’s why I say Instagram a lot.

[00:30:42] Facebook, not too much because I think Facebook, when you comment, your common goes on the top and then the people that follow, you can see that you comment on that. And I think a lot of people don’t like that. I, for me, I don’t comment on a lot of things because for that reason.

[00:30:58] Brian: [00:30:58] Right.

[00:30:59] Lupe: [00:30:59] But anyways, that’s why I say Instagram a lot, but a lot of followers have sent me messages and they comment that they bought it, that it really works. Thank you. Thank you so much. So. If you’re iffy about it, buy a small bottle, give him a try,

[00:31:13] Brian: [00:31:13] You know, and it’s funny. I don’t think I’ve ever mentioned that I run a podcast studio. And I have customers that have come in and they’ve seen the little bottles and I’ve given them to them and literally they try it and they open up their phone and they buy it right then.

[00:31:28] Lupe: [00:31:28] That’s why I can’t find my product, my little bottles. I’m like, how come I’m finishing this, so going through this so fast?

[00:31:35] Brian: [00:31:35] You must have really dry mouth.

[00:31:37] Lupe: [00:31:37] Shoot!

[00:31:37] Brian: [00:31:37] I don’t know what happened to them. Yeah. Give it a try. Let us know what you think, and I believe you will not be disappointed.

[00:31:48] Lupe: [00:31:48] And just to recap, I want to go over these. Should I start top to bottom or bottom to top?

[00:31:53] Brian: [00:31:53] Let’s do bottom to top.

[00:31:54] Lupe: [00:31:54] Bottom to top again. Okay. So, brain fog, 57%

[00:31:59] Brian: [00:31:59] Forgetfulness, 60%.

[00:32:01] Lupe: [00:32:01] Dry nose, 63.

[00:32:03] Brian: [00:32:03] Joint pain 64%.

[00:32:05] Lupe: [00:32:05] Trouble sleeping 67%.

[00:32:08] Brian: [00:32:08] Morning stiffness 69%.

[00:32:11] Lupe: [00:32:11] Dry or itchy skin 76%.

[00:32:14] Brian: [00:32:14] Fatigue 80%.

[00:32:16] Lupe: [00:32:16] Dry eyes, 92%.

[00:32:19] Brian: [00:32:19] Dry mouth 92%.

[00:32:22] Lupe: [00:32:22] Those are a tied at #1.

[00:32:24] Brian: [00:32:24] And again, this survey was done by the Sjogren’s Foundation. Please go like and follow them on whatever social media platform you’re comfortable with. You can go to the website at Sjogrens.org. You know, some of the cool things without even being a member, you can go to some of the resources that they have there, and you can learn a lot about Sjogren’s.

[00:32:48] But better yet, you can download the sheets that they put a lot of time and energy into producing that are for your healthcare providers. It’s a roadmap of what Sjogren’s I, how to treat it. And it’s written in that language, doctors speak., you know, all those crazy Latin words that we don’t quite get.

[00:33:10] Lupe: [00:33:10] Latin?

[00:33:11] Brian: [00:33:11] Latin. But you can help them treat you better by sharing these. And they have them for dentists, doctors, RAs, and there’s so many just great resources there.

[00:33:24] Lupe: [00:33:24] I remember when I went to a rheumatologist, I don’t go to him anymore, but, um, we actually took the sheets and he’s like, Oh, can I keep that please? Absolutely, please.

[00:33:33] Brian: [00:33:33] That’s why we brought them.

[00:33:33] Lupe: [00:33:33] So you can pronounce it right? Not “Sjojorns”, You can say Sjogren’s.

[00:33:38] Brian: [00:33:38] And one last thing, before we wrap up the show, in the show notes below, there is a link. Now we know it’s crazy times. There’s a lot of people not working. It’s just let’s not even go down that rabbit hole. It’s crazy times.

[00:33:55] If you are able, please join the Sjogren Strong team, to help raise funds for the foundation on our virtual walk in October. If you are unable to join now, this is a virtual walk, so you can join. $40 bucks, they’re going to mail you a tee shirt. You’re going to be able to rock that t-shirt get some cool selfies, throw them up, show some support on social media.

[00:34:22] But yeah, opening ceremonies, there’s going to be speakers. All of that done via zoom in the comfort of your own home. No clothes required. You can rock it in your PJ’s. After that, we’re all going to walk out our front doors and do a walk that we’re comfortable with.

[00:34:38] Now, Lupe and I are bumping it up a notch cause that’s what we do. We are meeting at the Huntington Beach pier that morning, we are going to go for a walk.

[00:34:48] Later on in the day is when the kickoff ceremony is going to happen. So, we’re going to watch that. And then we’re going to Carbon Canyon Park.

[00:34:57] Lupe: [00:34:57] In Brea., We’re going to walk from the parking lot to the redwoods. Beautiful over there.

[00:35:04] Brian: [00:35:04] It’s a cool little grove of redwoods and we’re going to walk out and that’s only about two miles. If you can join us for both rock on, if you can join us for one, pick your poison, AM, after noon and join us to walk.

[00:35:19] Now we will be social distancing. We’ll be wearing masks. We will, you know, be playing by the rules. However, if you want to get out and walk with somebody else, whether you’ve ever met us or not, let’s use this as an opportunity to meet somebody new and come walk with us.

[00:35:37] Lupe: [00:35:37] A lot of people have more energy in the morning. So come to the beach, a lot of people.

[00:35:42] Brian: [00:35:42] Like to sleep in, so the redwoods.

[00:35:44] Lupe: [00:35:44] Yeah. And several people already contacted us, and they want to do both with us. So, we’re excited to meet new people.

[00:35:53] Brian: [00:35:53] Definitely. Now, if you can’t walk with us, that’s cool, you can still join the virtual walk, join Team Sjogren’s Strong, and be part of this fundraising experience for the foundation.

[00:36:06] If you are not able to commit at that level, please donate to the team. You can donate to the team. You can donate a loop on the team, me on the team, and we have another member on the team right now. Um, you can donate to one of them in support of the team, in support of the foundation. And it’s a good time.

[00:36:25] This is our third year first virtual.

[00:36:28] Lupe: [00:36:28] Yes.

[00:36:29] Brian: [00:36:29] ,So it’s different, but we’re going to make the most of it. And yeah, we’re going to rock the day and we’re going to show support and we want to do our best to raise funds for the foundation. So, you’re going to be seeing more information about this, getting posted out over social media in the weeks to come, because we are getting closer and closer to that day.

[00:36:48] But we would love for you to join in support at whatever level you can do. Look, if it’s a dollar, if that’s what you’re comfortable with, that’s awesome. The money is going straight to the foundation. Who’s going to do good stuff for you.

[00:37:01] Lupe: [00:37:01] They’re doing good stuff for everybody. Guys, we’re going to be going live on Facebook and Instagram for the walk, so that’ll be fun. If you can’t join us on a walk, cast us on your TV, and walk with us that way.

[00:37:16] Brian: [00:37:16] Yeah.

[00:37:17] Lupe: [00:37:17] So I’m excited about it. You know what, every year that we’ve gone to the walk, it’s bigger and bigger every time. So, but this time, you know, COVID whatevs, blah, we’re going to be doing virtually and everybody can join.  Everybody everywhere can jo.

[00:37:34] Brian: [00:37:34] No matter where you are. And if there’s inclement weather outside, you can walk circles in your living room.

[00:37:40] Lupe: [00:37:40] That’s right, walk to the kitchen, to the bedroom, back and forth. It’ll be fun. Let’s do it.

[00:37:45] Brian: [00:37:45] It’ll be a good time.

[00:37:47] Lupe: [00:37:47] Thanks for joining us.

[00:37:48] Brian: [00:37:48] Be sure to like follow, subscribe to the show on your favorite podcast player. Hit us up on Instagram, Facebook, and Twitter.

[00:37:55] Lupe: [00:37:55] Until next time sip constantly and stay hydrated.

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