Sjogren's Strong

Introduction

Summertime Reminders

With summer upon us, we have been reminded that we need to pay closer attention to managing our Sjogren’s with the hot and dry weather!

Summertime Reminders

With summer upon us, we have been reminded that we need to pay closer attention to managing our Sjogren’s with the hot and dry weather!

Join us for this episode of Sjogren’s Strong!

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

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

[00:00:06] Lupe: [00:00:06] And this is your podcast discussing how to live an active and healthy lifestyle, despite a diagnosis of Sjogren’s.

[00:00:13] Lupe: [00:00:13] How you doing?

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[00:00:16] Brian: So, weather’s turning.

[00:00:19] Lupe: [00:00:19] It sure  is. Is it feels like it’s 120 degrees?

[00:00:23] Brian: [00:00:23] I think it was 78 today.

[00:00:25] Lupe: [00:00:25] Okay, check it about the weather. It’s really hot outside and my work, they keep it at 65 degrees.

[00:00:34] Brian: [00:00:34] So, you’re nice and chill  all day.

[00:00:37] Lupe: [00:00:37] All day! I have to wear my fingerless gloves, because I have to work. I took a scarf in. I’m wearing like my ski jacket. I don’t ski, but you know, a really heavy jacket.

[00:00:49] Brian: [00:00:49] And I see you have  a sweater on.

[00:00:50] Lupe: [00:00:50] A sweater on. I mean, it’s just freezing. And then I go outside and it’s 120. I feel like I’m going to,  I’m going to get sick, right?

[00:01:01] Brian: [00:01:01] Yep. So, uh, with the weather turning, we’ve noticed a few things going on with Ms. Lupe. . And if they’re going on with her, we’re sure they’re going on with some of you.

[00:01:11] Lupe: [00:01:11] So, I’ve noticed there’s a lot of mosquitoes. And they love me.

[00:01:17] Brian: [00:01:17] Well, we did sit outside last night and play cards.

[00:01:20] Lupe: [00:01:20] Yeah! No!  I’ve had these before.

[00:01:22] Brian: [00:01:22] Yeah?

[00:01:22] Lupe: [00:01:22] Before last night,

[00:01:24] Brian: [00:01:24] But it’s that time of year, mosquitoes are popping.

[00:01:26] Lupe: [00:01:26] I have mosquito bites on my legs and my ankles, my inner-outer arm.

[00:01:33] Brian: [00:01:33] Her inner outer arm?

[00:01:34]Lupe: [00:01:34] On my neck. They’re just everywhere. And the thing about me with mosquito bites, I think they’re mosquitoes, I mean, there could be little spider bites, I don’t know. But they get so affected and they get really swollen. And they’re about the size of a half dollar.

[00:01:54]Brian: [00:01:54] With my measuring tape. I’m measuring about a quarter, inch.

[00:01:57]Lupe: [00:01:57] Half dollar. And so, what I have to do because I see it every day,  the circle gets bigger and bigger around it. So, I just take like a Sharpie and I circle around it. And that’s how I know if it’s getting bigger not.

[00:02:11] Brian: [00:02:11] But you’ve been treating them with Iodine.

[00:02:13] Lupe: [00:02:13] It’s the only thing that help. Any little cut or anything, I need to use Iodine because nothing else works.

[00:02:18] Brian: [00:02:18] And not  just Iodine,  tincture of, there’s no color.

[00:02:22] Lupe: [00:02:22] That’s why. Cause I don’t want my skin to be all red and stuff.

[00:02:25] Brian: [00:02:25] About a quarter of her would be orange, right now.

[00:02:27] Lupe: [00:02:27] Shoot! Everywhere!

[00:02:30] Brian: [00:02:30] But you did go over to your parents this weekend. I’m sure you hung outside.

[00:02:34] Lupe: [00:02:34] Whoop! Whoop! Finally saw my parents,

[00:02:35] Brian: [00:02:35] Which is cool, but being outside all day, you’re around bugs.

[00:02:39] Lupe: [00:02:39] They had mosquitoes too. I saw them.

[00:02:41] Brian: [00:02:41] Yeah.

[00:02:41] Lupe: [00:02:41] But they didn’t get me, not there. I don’t think so, anyways. Cause I already had them. I don’t see any new ones, from yesterday.

[00:02:49] Brian: [00:02:49] Yet.

[00:02:49] Lupe: [00:02:49] But okay, so that, the mosquito bites, and I’m pretty sure it affects you guys the same way.

[00:02:59] And also, I believe it’s the heat. It’s a combination of heat and probably sugar, but, uh, I have a lot of inflammation going on. I have sausage fingers. My ankles are swollen. My face is swollen. Over the weekend, I weighed myself this morning and I gained about five pounds.

[00:03:22] And, um, because of the heat,  the inside of my mouth is cracked, and  I have sores. My tongue is cracked, it hurts to eat. And sometimes I get used to it. But, uh, in the morning I have a protein shake ,on my way to work and I couldn’t finish it because my mouth, cause my tongue burned so much. And I didn’t put anything new in it. It’s just the same stuff, but I just couldn’t take it today.

[00:03:52] Yeah, I’m sure a lot of the spices we use in your shake, the turmeric and stuff like that. is a little abrasive in your mouth, too. And if you’ve got, you know, the dry Sjogren’s mouth and abrasives, no good.

[00:04:08] No, Bueno. Not today.

[00:04:10] Brian: [00:04:10] We wanted to do this episode because as a reminder, the weather’s changing and with the weather changing, we need to change some habits to get through this warmer, dry season.

[00:04:24] Lupe: [00:04:24] You  know what’s weird about that? I know what I have to do but you kind of forget

[00:04:30] Brian: [00:04:30] Well yeah,  life gets busy, Father’s Day and family, and next thing you know, your lips are dry and chapped. And you’re just looking at them and, and you’re not drinking enough water and it just compounds, right?

[00:04:43] Lupe: [00:04:43] Yeah. You think you kind of get used to it and then bam, it gets worse.

[00:04:47] Brian: [00:04:47] It hits you in the face.

[00:04:49] Lupe: [00:04:49] So, we wanted to do a recap, like a summer recap, you know, what you need to do, pay attention to, stuff like that.

[00:04:58]Brian: [00:04:58] You know, the obvious one’s drink water.

[00:05:01] Lupe: [00:05:01] Lots and lots of water.

[00:05:04] Brian: [00:05:04] And you know, it is summer. So, you’re sweating a little bit. Make sure you’re getting a little bit of electrolyte back in you.

[00:05:09] Lupe: [00:05:09] I mean, I don’t feel myself sweating or see it. I glisten anyways, I don’t sweat.  All my Sjogi’s do the same.

[00:05:18]Brian: [00:05:18] Right.

[00:05:21] Lupe: [00:05:21] So, drink lots of water. You know what? I have a Thermal Flask;  I love buying water bottles. And I saw this really cool one on Amazon and it’s a Thermo Flask and it’s just a perfect size for my hand.

[00:05:35] Brian: [00:05:35] And wait a minute. It came in a two-pack c and she’s like, Brian, which one do you want? And I said, which one do you want? Because it doesn’t matter which one, I want. You’re going to take the one you want, whether it’s one I want or not.

[00:05:46] So she says, I claim the burgundy one. I’m like, cool. So, I’m going to grab the white one. And I’ve got a large one in the office that I’ve been using for water for my own hydration. And I’m like, cool. I’m going to be able to get rid of the larger one and use this smaller bottle from like 32 to 24 ounces. So, it doesn’t take up as much room and it’ll be easier. Right? Yeah,  she took that one too.  She gave it and took it back.

[00:06:14] Lupe: [00:06:14] Hey, you know what? I love them so much. I have one of my cars, just in case, I don’t know. I go somewhere, don’t want the ice to melt. Don’t want my drink to get hot  and yeah.

[00:06:24] Brian: [00:06:24] So, yeah, I’ve got the 34 ounce still, which is still cool. It’s still good to have it right there.

[00:06:29] Lupe: [00:06:29] You’re a big Papa. You could put a lot of water in it

[00:06:32] Brian: [00:06:32] Come on now. ,us convenience though.

[00:06:34] Lupe: [00:06:34] Anyways, I like the size because it’s perfect for my hand and it’s not too heavy, where the one that you have?

[00:06:40] Brian: [00:06:40] Full, it’s got some weight to it.

[00:06:42] Lupe: [00:06:42] I kind of wanted it really bad, but it’s kind of heavy, so anyways,

[00:06:45] Brian: [00:06:45] So, I get the second larger one that you have?

[00:06:50] Lupe: [00:06:50] Nope.

[00:06:52] Brian: [00:06:52] Went from, she bought us, to she’s got three now.

[00:06:56] Lupe: [00:06:56] Brian’s always like, you don’t need any more water bottles, but then he’s the first one to want one.

[00:07:02] Brian: [00:07:02] She doesn’t, I think we have more Thermal Flasks than glasses.

[00:07:07] Lupe: [00:07:07] Well, Thermal Flask, hydration, flasks, you know, some from Walmart. Probably all made by the same company.

[00:07:14] Brian: [00:07:14] But anyway, we’ve talked about it before, whatever you’re comfortable drinking out of, that’s what you go with. You know if you want the insulated. Cool. If a water bottle is fine. Cool. Just make sure you’re hydrating.

[00:07:24] Lupe: [00:07:24] And I like my water ice cold. That’s why water bottles are important to me, but a lot of people just like it, room temperature so, right on.

[00:07:34] Brian: [00:07:34] Whatever you like, just do that, and make sure you’re hydrating,

[00:07:38] Lupe: [00:07:38] That’s right.

[00:07:40] Brian: [00:07:40] You know, and then it’s some of the simple things, we’ve talked about humidifiers time and time again. And it’s easy to forget to turn it on, but with the weather drying out, like it is here in sunny, Southern California, we need to make sure we walk in the house, turn them on. Drop bags, turn them on, then go change. That way when you come back out in the living room, in our case, there’s some moisture in the air. And it’s just, it’s already started.

[00:08:04] Lupe: [00:08:04] You definitely forget. I shouldn’t say you, but I forget sometimes. And then my eyes start feeling really fatigued. And I don’t, sometimes I don’t even think it’s the humidifier, that I didn’t turn on. I just feel like man, I’m just tired, but I know it’s, my eyes, they’re just dry. And the only way I get relief is to  close them and fall asleep.

[00:08:32] Brian: [00:08:32] Eye drops, humidifier, throw them Zienna glasses on, for a little while. Get that moisture building up and then you won’t be tired. And it’s not that you’re tired. It’s just that you’re getting relieved with your eye closed.

[00:08:45] So let’s add different types of relief, so you can keep your eyes open past 7 PM.

[00:08:50]Lupe: [00:08:50] Sometimes, even earlier. Oh, it’s funny. Happy Father’s Day to all the Papa’s out there. Brian’s daughter, Shelby came over yesterday and she looks at the clock and she’s like, it’s 6:30,I think it’s past your bedtime already.

[00:09:04] Brian: [00:09:04] Yeah, she was talking some  smack last night.

[00:09:06] Lupe: [00:09:06] It was funny.

[00:09:08] Brian: [00:09:08] But she hung out till 9:30 PM.

[00:09:09] Lupe: [00:09:09] Yeah, it was cool. We had fun.

[00:09:11] Brian: [00:09:11] Yeah, as soon as she left, I was in bed.

[00:09:13] Lupe: [00:09:13] We were playing UNO, they both spanked me. I think they weren’t cahoots against me.

[00:09:20] Brian: [00:09:20] Yeah! No! I just have to talk less crap when I’m playing cards. I just like talking crap when I’m playing any gam. I, like getting people’s heads.

[00:09:30] Lupe: [00:09:30] Well, you didn’t get in my head. I just sucked.

[00:09:34] Brian: [00:09:34] Well, it was a new game for both of us. It takes a while to get.

[00:09:37] Lupe: [00:09:37] UNO? It can’t be that hard. 

[00:09:39] Brian: [00:09:39] Flip and the whole symbols. And what does this one mean? And it was  different.

[00:09:45] Lupe: [00:09:45] Yeah it was. It was fun though. It was cool.

[00:09:47] Brian: [00:09:47] Yeah, it was a good time.

[00:09:48] So hydration, humidifier lotions. Just applying lotions and letting your body absorb that moisture, you know, through your skin. So, your skin is not drying out as much or as fast, um, will make you more comfortable.

[00:10:02] Lupe: [00:10:02] Well, check it. So, now you have to wash your hands a million times a day, right?

[00:10:07] Brian: [00:10:07] My hands are so dry right now.

[00:10:08] Lupe: [00:10:08] Yeah. Imagine mine. So now you have to wash them a million times a day and then you have to apply lotion and then you have to keep using the hand sanitizer. My hands are absorbing so much alcohol I’m getting drunk.

[00:10:23] Brian: [00:10:23] That would be cool.

[00:10:25] Lupe: [00:10:25] No, but you know what I mean? Cause. I mean, my hands are just dry.

[00:10:29] Brian: [00:10:29] You’re absolutely right. There’s I look at my hands, right now, there’s just lines. They feel dry. Like they’re getting ready to crack. And I don’t think I even, I don’t use lotion much.

[00:10:40] I don’t even have lotion at my desk. We need to rectify that because my hands are like super dry.

[00:10:46] Lupe: [00:10:46] So I have lotion on my desk and then I have a small lotion in my purse, and I have a little lotion in my car ,as well. But you know what? It’s like, you apply lotion and then you have to use the hand sanitizer. They cancel each other out. But you got to do it.

[00:11:03] Brian: [00:11:03] Don’t they make this wax thing, you put your feet in for pedicures?

[00:11:08] Lupe: [00:11:08] I don’t know. I think I’ve had one pedicure in my whole entire life. So, I don’t remember.

[00:11:13] Brian: [00:11:13] I wonder if we can get like a home kit for the hands? Because I’m sure it’s a special kind of wax.

[00:11:19] Lupe: [00:11:19] Waxie thing?

[00:11:21] Brian: [00:11:21] So, you dip your hands in it and you pull it out and it hardens and then it does something and then it peels off. Okay. I tell you what, since Lupe and I are both not the people to talk to about manicures and pedicures, listeners, am I imagining this or is there some sort of wax treatment for hands and feet?

[00:11:43] If there is, let us know. I’m sure we’re going to be Googling tonight, but maybe there’s a home version of that is my point.

[00:11:51] Lupe: [00:11:51] I want to grab my phone and research already.

[00:11:53] Brian: [00:11:53] Listeners let us know.

[00:11:55] Lupe: [00:11:55] Y each, I’m definitely not, not, not that person. Cause I don’t get manicures or pedicures.

[00:12:01] Brian: [00:12:01] So the first time Lupe and I rode a century bike ride together, we drove up together and we drove back together. And on the way back, I’m like, Hey, let’s stop and get a massage., She’s like, ah, you nonomino.

[00:12:15] I’m like, there’s this great restaurant.  Right,  four,  five doors down there’s a great little massage place. We’ll go get some shiatsu massage.

[00:12:24] And she, she wasn’t like excited about it, but I don’t think she came out and said, no.

[00:12:31] Lupe: [00:12:31] Well, we were barely dating,

[00:12:33] Brian: [00:12:33] Well, it’s not like we’re naked in the same room together. It’s shiatzu so you’re in a big room.

[00:12:38] Lupe: [00:12:38] No, I’m not even talking about being naked. I’m just talking about, I don’t know, I didn’t want to say no. I don’t know.

[00:12:45] Brian: [00:12:45] We have a beautiful Peruvian dinner and we go down for some shiatsu massage and it’s a big open room and everybody’s on tables, you know, there’s no, you’re not naked, so there’s no need for privacy. And you’re just getting worked on. And it felt so good after riding a hundred miles and then driving a hundred miles back home. And she came out of there and she’s like, never again,

[00:13:07] Lupe: [00:13:07] Well it hurt. Okay. I never get massages for that reason. It hurt.

[00:13:13] Brian: [00:13:13] And this is back before Sjogren’s was a thing, right?

[00:13:16] Lupe: [00:13:16] But, I wasn’t diagnosed yet.

[00:13:18] Brian: [00:13:18] Right.

[00:13:18] Lupe: [00:13:18] But.

[00:13:18] Brian: [00:13:18] The symptoms were there.

[00:13:20] Lupe: [00:13:20] A few months later I was diagnosed. And just the touch, it just really hurt. And not only that. Okay. So, this was probably my first massage. And so, this person, I don’t remember male or female, they dug their elbow into my buttocks and I’m like, turn back and looked at them. And I’m like, are they supposed to be doing that or am I  getting violated? I don’t know.

[00:13:50] I came out and then I told, you know, the story, nobody starts laughing at me. Cause I guess, I guess that’s normal. But for me, I was like, aw. But I don’t like massages because it hurts. I mean,

[00:14:01] Brian: [00:14:01] Which makes sense. And me I’m digging it out, like harder, harder, especially the legs after that bike ride.

[00:14:07] Lupe: [00:14:07] I’m like, ouch, ouch, ouch. I don’t know, years later he’s like, let’s go get a massage. I’m like nope. Anyways, that was funny. Good memory.

[00:14:17] Brian: [00:14:17] Too funny. Yeah. Taking care of your skin, taking care of your eyes,

[00:14:22] Lupe: [00:14:22] Also your mouth. Very important. Because your mouth gets cracked. You get blisters in the inside of your mouth. Not only that, but it really affects your teeth.

[00:14:35] Brian: [00:14:35] That it does. And as she discovered this morning, the turmeric and  these spices and herbs that’s in her morning shake was so abrasive. She couldn’t finish it. So, you know, and we’ve been using the lozenges that we’ve spoke up before we’ve been using Lubricity. And for those of you who haven’t tried it yet, that coupon code is still. available and good.

[00:15:02] It is SS30, there are  links in the show notes. You can go to lubricityinnovations.com, there will be a link in the show notes and use that coupon code SS30 and you will get 30% off your order. So, take advantage of that. I use it more Thursday and Fridays because I do more talking then the rest of the days of the week.

[00:15:24] However, Lupe’s  been using it and it does help.

[00:15:27] Lupe: [00:15:27] It’s really good stuff.

[00:15:28] Brian: [00:15:28] And remember when you’re constantly sipping, you’re rinsing any treatment away as well. So, you might have to use it a little more often.

[00:15:34] Lupe: [00:15:34] Yeah. So that, Oh, and also with that, your lips get really chapped. And I mean, you know, I’ve posted many different Chapstick’s that I’ve used. I just always have one in my purse.

[00:15:50] Brian: [00:15:50] Many.

[00:15:51] Lupe: [00:15:51] Many. Brian’s like you don’t  need anymore. Yeah, I do. Because they get lost. I don’t know what happens, they get lost,

[00:15:58] Brian: [00:15:58] We were cleaning out the office, two weeks ago, three weeks ago. And you had like a bag of 30 .

[00:16:02] Lupe: [00:16:02] That’s only the ones that were in the office.

[00:16:04] Brian: [00:16:04] My point.

[00:16:06] Lupe: [00:16:06] Yeah.

[00:16:06] Brian: [00:16:06] Many.

[00:16:07] Lupe: [00:16:07] But, uh, yeah. When your lips feel dry,  that’s the first sign of dehydration.

[00:16:12] Brian: [00:16:12] When you notice yourself licking your lips more and more, that should be the trigger to get Chapstick or Blistex or CarMax or whatever product you use for your lips on your lips.

[00:16:25] Lupe: [00:16:25] The only thing I heard was muah, muah, muah, I’m out of Chapstick. I might’ve Chapstick. Let’s go to the store and buy some.

[00:16:32] Brian: [00:16:32] No. I could wait till I get home. I’ve got one  in the Jeep.

[00:16:39] Lupe: [00:16:39] Eye drops, hydration, humidifier lotions, oral spray lozenges, Chapstick.

[00:16:48]Brian: [00:16:48] And it’s easy to forget because we’re coming out of cooler months and the cooler months are gone. I mean, the last four days it’s been high of low seventies overcast, most of the day. And today that sun burned off early and you feel it.

[00:17:06] Lupe: [00:17:06] You know what, another thing I wanted to mention while I was working from home, not because I was lazy just cause I just didn’t have to, I didn’t shower every day. So, I didn’t wash my hair every day. Cause usually, you know, when I actually have to get up and go to work, I shower every day. And so, I wasn’t doing that, and I felt like my hair was getting a little bit oily. And I don’t know if anybody has dry scalp, but if you don’t wash your hair every day, that might help.

[00:17:37] Brian: [00:17:37] Yeah, the natural oils. My sister Val had very, very long hair and my mother would help her brush it every day. And that brushing explained to me back then was distributing those oils throughout the hair. But it’s supposed to be from what I understand. Good for your air.

[00:17:53] Lupe: [00:17:53] Well, I have really curly hair, so if I don’t shower in the morning, my hair, you know, is really frizzy. But I was working from home and I was just kind of spray a little bit of water and I actually liked the way it styles better. So, now I only wash it a couple of times a week because I like it. So, I do feel they get a little bit oily and I’m digging it. But, um, my scalp, it never noticed that it ever really itched. So, I just thought about that. It might help to.

[00:18:21]Brian: [00:18:21] I think that’s it for my list.

[00:18:24] Lupe: [00:18:24] Yeah. We just wanted to do a  little recap; you know. Just to remind everybody.

[00:18:28]Brian: [00:18:28] Cause it’s easy to forget and if we’ve forgotten, it’s taken the dry mouth and the cracked mouth and the dehydration to remind us, Oh crap. It’s summer. We need to kind of get into summer mode, then I’m sure, hopefully will benefit a couple of you out there, as well.

[00:18:42] Lupe: [00:18:42] It’s something really cool. I made a post yesterday, uh, and I wanted to know where everybody was from. And we have people from everywhere, which really warmed my heart. It was really cool.

[00:18:56] Brian: [00:18:56] That’s  kind of cool. If you haven’t seen that poster it’s on Facebook.

[00:18:59] Lupe: [00:18:59] Ah, Facebook and Instagram.

[00:19:00]Brian: [00:19:00] Hit us up. If you haven’t let us know where you’re from.

[00:19:02] Lupe: [00:19:02] Yeah. It was pretty cool.

[00:19:04] Brian: [00:19:04] Kind of cool. And this weekend we’re supposed to have Shelby back in the studio talking about pregnancy and labor and delivery, with Sjogren’s,

[00:19:12] Lupe: [00:19:12] I wonder if she’s had patients with Sjogren’s. Since she’s been delivering babies.

[00:19:15] Brian: [00:19:15] Yeah. Don’t know?

[00:19:17] Lupe: [00:19:17] It’s going to be interesting. I can’t wait. It’s going to be a cool episode.

[00:19:19] Brian: [00:19:19] Yeah, we’ll get caught up on that side of the house. But anyway, this episode is brought to you by lubricityinnovations.com. And remember that coupon code SS30. There will be a link to their website below, and we want to thank them for helping the show out.

[00:19:33] Lupe: [00:19:33] Until next time sit, possibly and stay hydrated.

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