The Importance of Community

We understand the importance of community and how one can feel that they are alone when battling a chronic illness. Community is important and you can find it here!

We understand the importance of community and how one can feel that they are alone when battling a chronic illness. Community is important and you can find it here!

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

[00:00:02] Brian: [00:00:02] This is Brian.

[00:00:03] Lupe: [00:00:03] And this is Lupe.

[00:00:04] Brian: [00:00:04] And this is your podcast discussing how to live an active and healthy lifestyle, despite a diagnosis of Sjogren’s.

[00:00:10] Lupe: [00:00:10] Hey everybody!  We hope everybody had a nice and safe 4th of July.

[00:00:17] Brian: [00:00:17] Safe and sane, as the fireworks stand say  out here in California.

[00:00:22] Lupe: [00:00:22] Oh, and speaking of 4th of July, Brian is a 4th of July baby. So, Brian, happy belated birthday.

[00:00:30] Brian: [00:00:30] Thank you!

[00:00:31] Lupe: [00:00:31] Everybody celebrates your birthday.

[00:00:35] Brian: [00:00:35] Illegally.

[00:00:36] Lupe: [00:00:36] Sometimes.

[00:00:37] Brian: [00:00:37] Out here. Man, the fireworks, it’s so funny because back in the day, we used to go to a place to watch a firework show. Nowadays, where we live, you know what you can’t even say, where we live. LA, Orange, it was jus.

[00:00:54] Lupe: [00:00:54] Everywhere.

[00:00:56] Brian: [00:00:56] They had helicopter flyovers  and all you could see were fireworks for miles and miles and miles. And we’re talking mortars in the air, which are illegal in this state. Just banging.

[00:01:11] Lupe: [00:01:11] I mean, you look up at this sky, beautiful, right. But the bang and, Oh my goodness. And I poured doggy. She wasn’t happy at all.

[00:01:19] Brian: [00:01:19] This was her first, July 4th with us. So, fortunately, leading up to 4th of July, people start popping the mortars early and we realized this was going to be an issue. So, we didn’t make plans. We wanted to be home. We bought Benadryl and we don’t want to hear the hate about giving dogs, human meds. Been doing it for years, never had an issue.

[00:01:44] We gave her a small dose of Benadryl, to relax her, because it had been bad. It didn’t help. I gave her the next half.

[00:01:54] Lupe: [00:01:54] Did not work at all.

[00:01:55] Brian: [00:01:55] It did not work, didn’t faze her. And being a responsible dog own, I wasn’t going give her more. I gave her enough that should have helped. It didn’t. So enough is enough. We’re just going to suck it up for the next five hours.

[00:02:10] Lupe: [00:02:10] Because I think she was so freaked out. I felt so bad for her. Cause you know what she did? First, I’m scratched up because she was like jumping all over us, But I got to be too much for her. She crawled into the bookshelf. She kind of just.

[00:02:25] Brian: [00:02:25] Knocked the books off the bottom row of the bookshelf and crawled in there and was just like cowering, I felt so, so bad .But it got to the point where she didn’t even want to be in our lap. She just wanted to go hide, which she did.

[00:02:42] Lupe: [00:02:42] We’re, like where’s Lilly? Looking everywhere. Oh, there she is.

[00:02:46] Brian: [00:02:46] Yeah. We had a couple of foam rollers leaning up against it and she was kind of like back behind them, hiding.

[00:02:51] Lupe: [00:02:51] Poor little girl.

[00:02:52] Brian: [00:02:52] Poor little girl. But that’s that was our fourth.

[00:02:56] Lupe: [00:02:56] Yes.

[00:02:57] Brian: [00:02:57] That was our fourth. Hung out with my daughter.

[00:02:59] Lupe: [00:02:59] For a little bit.

[00:03:00] Brian: [00:03:00] Did a little birthday barbecue but got home in time to watch the dogs and make sure they were going to be okay. And saw a few fireworks and hung out.

[00:03:11] Lupe: [00:03:11] And yesterday there was a few fireworks, but not too bad.

[00:03:15] Brian: [00:03:15] Yeah, not too bad. She wasn’t back in the bookcase.

[00:03:20] So onto today’s episode, we wanted to discuss community. Going on two years now, we’ve been building this Sjogren Strong community across Facebook, Instagram, Twitter, Facebook group, and this podcast.

[00:03:36] Lupe: [00:03:36] And first, we want to thank all the listeners, followers, everybody in our Sjogren’s Strong community.

[00:03:45] Brian: [00:03:45] Yeah. A heartfelt thank you. Um, it’s been amazing to watch this grow. It’s been amazing to interact and get to know some of you. Um, some of you better than others.

[00:03:57] Um, you know, me personally, I learn a lot. From time to time, I’ll go back through the feed and read posts and try to catch up and try to stay caught up. And, and the one true thing I’m amazed with is the Facebook group. How well you guys take care of each other and I’ve said it before, I’ll continue to say it because it is awesome to see that true community. The willingness to want to help each other out.

[00:04:23] Lupe: [00:04:23] Now it’s not only Facebook. Instagram is also a great community. The difference with Instagram is that. It doesn’t pop up in your feed, right. But it’s a great community. People talk to each other, people, help each other, every platform, thank you.

[00:04:40] Brian: [00:04:40] A lot of DM’s going back and forth.

[00:04:42] Lupe: [00:04:42] Yeah.  A lot.

[00:04:43] Brian: [00:04:43] And I vowed to do a better job on Twitter, I’ve been trying. I think I’ve upped the game a little bit, but it is growing, as well.

[00:04:52] In addition to an online community, we need to think about in-person communities, as well.

[00:04:58] Lupe: [00:04:58] So, to give you an example, I was working for home for three months and I think this is my fourth week, I want to say, at the office. And for the last two weeks straight, without missing a day, I’ve committed to a coworker and we walk during our breaks and we walk during lunch.

[00:05:19] So, we kind of eat at our desk throughout the morning, when it’s our lunchtime, we want to walk. What helps me  is committing to someone. Because if she wasn’t there or she didn’t want to walk, I don’t know that I would.

[00:05:33] Brian: [00:05:33] And that’s the beautiful thing about community, you can  () A) ()   ()  take care of each other when you’re not well, motivate each other when you’re just not feeling it. It’s that accountability. You don’t want to let that other person down, so you’re more willing to get up and do it. And even though you don’t want to, you feel better for it, when you do.

[00:05:54] Lupe: [00:05:54] And you feel better after. So, it’s been really hot here. And I think if she wasn’t walking with me, I probably wouldn’t walk. Because, Oh, geez, it’s too hot., right. So, I took off my sweater and wear a little visor and I’m good.

[00:06:11] Brian: [00:06:11] It has been hot. Well, I mean, it’s 80 degrees for us.

[00:06:15] Lupe: [00:06:15] So the good thing is, well, good and bad. It’s really cold in the office, I think I’ve mentioned that before. And, um, we walked back from our walk and it feels great for about 10 minutes and then we’re freezing again. But yeah, I’ve been feeling good.

[00:06:30] Brian: [00:06:30] Well, and that’s one thing, when I come in from outside, I actually go to the bathroom and I washed my hands and I take some cold, hand towels and, you know, I wipe my face down. And I wiped the back of my neck and I tried to cool down a little bit before I come back into the air conditioning. Because if you’re sweaty coming back into AC, it gets me congested and will eventually get me sick.

[00:06:54] Lupe: [00:06:54] Right.

[00:06:54] Brian: [00:06:54] And you’ve been crushing the water, you’ve been drinking. Your fluid intake has increased, two threefold.

[00:07:02] Lupe: [00:07:02] This is a 40-ounce Hydro flask and at work, maybe I drink one and a half, So that’s pretty good.

[00:07:11] Brian: [00:07:11] And then you’re going through another one at home.

[00:07:12] Lupe: [00:07:12] Yes.

[00:07:13] Brian: [00:07:13] Um, one thing you’ve cut back on is the hot teas in the morning, and I’m assuming that’s just because of the heat.

[00:07:18] Lupe: [00:07:18] It’s just hot. I don’t have enough time to drink them, maybe. I don’t know. But maybe I got tired of them.

[00:07:25] Brian: [00:07:25] Yeah. And one thing we did do is we bought some extra cucumber and I sliced it up and we’ve had cucumber water soaking in the fridge and since yesterday, and I’m actually looking forward to a nice glass of. cold cucumber water when we get home.

[00:07:38] We’re kind of getting off topic of community, but I guess its kind of a, uh, what’s been going on because she’s got this community at work and has been crushing it. And when I say crushing it, how many miles?

[00:07:49] Lupe: [00:07:49] It’s a little under four miles, like 3.7,5 miles, daily. Because it’s,15 minutes and then lunch and then 15-minute break again.

[00:08:00] Brian: [00:08:00] So you’re doing three sessions totaling, approximately an hour? And on a good day, how many miles you are getting in.

[00:08:08] Lupe: [00:08:08] I’m going to say four miles.

[00:08:11] Brian: [00:08:11] I was going to say didn’t I see a six-mile day

[00:08:13] Lupe: [00:08:13] Yes, but I worked a 12-hour shift because it was, we were being audited and it was month end.? And you know how that goes? So, we worked 12 hours. So, we had to take two lunches, Two lunches, three breaks.

[00:08:28] Brian: [00:08:28] It amazes me because some days, when she was working at home, she would get up, work her eight hours and be done for the day. And she crushed it 12 hours a day with a six-mile walk. So, hats off to you.

[00:08:45] Lupe: [00:08:45] Whew. Whew! Whew! Pat myself on the back. Good girl done. Good.

[00:08:48] Brian: [00:08:48] And part of that has to do with that community though. You were walking with your coworker.

[00:08:54] Lupe: [00:08:54] Of course now we talk and we’re like, Oh, we should have done this when we were working from home, but you know how it is. But, um, so definitely, yeah, that’s been helping out. Um, every day is different. That’s what I say when I post, every day is different. Because the week before that, I think I walked, maybe barely three miles. And I shouldn’t say barely that’s quite a bit, but, um, it was less than the six miles and I was having a hard time. And I was just proud of myself that I was able to walk six miles and I crushed it. And it helps to have a cheer leader with you.

[00:09:29] Brian: [00:09:29] Definitely. So, we’ve talked about the online community that we’re building and there’s other online communities out there, as well. There are some websites that are forums. There are other Sjogren’s pages. There are other Sjogren’s YouTube. And YouTube, I forgot about YouTube and the video suck. I don’t know why you guys watch them. But you do.

[00:09:47] It’s basically the audio with one image, But yeah. I guess some people are consuming audio via YouTube rather than a podcast player.

[00:09:56] Lupe: [00:09:56] A lot of people do not know what a podcast is or how to.

[00:10:01] Brian: [00:10:01] Subscribe.

[00:10:02] Lupe: [00:10:02] They don’t know, you know. I think it was last week, I got a message.

[00:10:06] Brian: [00:10:06] But they know what YouTube is.

[00:10:08] Lupe: [00:10:08] But they know YouTube. So that’s why they listen to YouTube. So, it doesn’t matter where you listen, just listen.

[00:10:13] Brian: [00:10:13] Just listen and share. In addition to these types of communities, the Sjogren’s foundation, here in the States, the Sjogren’s Canadian foundation, and I’m sure there’s other organizations around the globe, but they have support groups.

[00:10:32] Now Sjogren’s Foundation here in the States, we know the support groups are suspended because of COVID and I’m sure they are in other parts of the world, as well. But get involved, get a call list, make a friend, see where people live, go to these groups, and talk to people. Cause you might find that somebody in this group lives the next block over or a couple blocks away. And you guys can meet up and whether it’s walking or just talking and having that. person that understands the struggles, that you face on a day to day basis can help.

[00:11:11] Lupe: [00:11:11] You know what?

[00:11:11] Brian: [00:11:11] What?

[00:11:12] Lupe: [00:11:12] Remember we, um, we were doing the Meetup, walking once a month and then COVID hit. And we haven’t been able to do that. And now I’m a little bit bummed.

[00:11:21] Brian: [00:11:21] Yeah. Chronically Active.

[00:11:23] Lupe: [00:11:23] It’ll come back. Well, when COVID goes away.

[00:11:25] Brian: [00:11:25] Yep.

[00:11:26] Lupe: [00:11:26] Soon. I hope.

[00:11:28] Brian: [00:11:28] Hopefully. Hopefully soon. But yeah, we really wanted to stress the importance of that community because we know family and loved ones don’t really understand. We know this being an invisible illness that people don’t see something wrong with you, so they don’t get it. You know, a lot of times in a demeaning way.

[00:11:49] Well, we get it. And I mean, when my wife says… you know what, my wife rarely tells me I’m tired. But I can see the fact that she’s done.

[00:12:01] Lupe: [00:12:01] How can you tell ??

[00:12:04] Brian: [00:12:04] Usually you’re like, give me my blanket and she’s done. No, it’s the facial expressions. It’s the way you talk. It’s are you drinking more? Are you on your phone more or less? And your body language tells me. I know when you’re winding down. And I just. Accept it. And we wind down together. Or  I let you wind down and then I’ll break out the computer and go back to work or something along those lines.

[00:12:36] But ,we, in the Sjogren’s community understand what other Sjogi’s are going through. Even though it’s an invisible illness, I think that lends us to take heed to what is spoken in, what is seeing more than, Oh, there’s nothing wrong with you. If somebody was Sjogren’s says they’re tired, we understand what that means.

[00:12:57] Lupe: [00:12:57] And  I appreciate that very much? I know I’m on my phone a lot, but that’s because I’m trying to stay awake. Because the second I set my phone down, I’m going to knock out. And sometimes I don’t want to cause it’s six o’clock.

[00:13:13] But speaking of community, I want to throw something out there.

[00:13:15] Brian: [00:13:15] Throw it.

[00:13:16] Lupe: [00:13:16] So I was thinking of doing like maybe a post a week, like for Wednesdays. And I want to call it Workout Wednesday. I’m just saying I’m thinking about it, but I want to know if people would like that because I’ve had a few people reach out and ask me, is there a workout that I recommend, or, you know, can I help a little bit with something? And I mean, it’s kind of something that I’ve been wanting to do.

[00:13:41] And I thought, you know, maybe this is a good time. And I was thinking about calling it Workout Wednesday, but I’m thinking, do I want to do like a live show or maybe record myself doing a few exercises, um, and post those, I don’t know.

[00:13:58] Okay. So, check it guys. Uh, lately for me personally, I’ve felt I’m getting really stiff, right. And I feel it mostly in my left shoulder and it hurts to move, and it hurts to reach. And I know I need to stretch it and I thought, you know, shoot, man, I just need to try some yoga. That’s what everybody has said is try yoga. So, like what would help you guys, what would you want? Ah stretches, hula hoops, a little bit of, not necessarily weight, you know, you could use your own weight and stretch, or I don’t know. Is that something you guys think you would be into?

[00:14:44] Brian: [00:14:44] And let us know. I mean, within reason nothing’s outside of us trying it, attempting it, giving it a go. And if we can do it with you virtually, then we will.

[00:14:56] Lupe: [00:14:56] That’d be cool. And look, I’m no expert, but especially when it’s really hot, I’m not as active as I would like to be, or once was. But I just, you know, thought maybe we could motivate each other. And I will do a little bit of research and, you know, maybe do beginners moves, you know, YouTube or wherever. And then whatever I learned. We can do it together.

[00:15:23] Brian: [00:15:23] So, to wrap this episode up, again, we want to thank you, the listeners and those who follow us on Instagram, Facebook, Twitter, we greatly appreciate you and interacting with you. And, um, you know, hope to do more of that as time passes.

[00:15:40] Hey, and before we go, we want to remind you to give Lubricity a try. Duplicity works differently from other solutions, forming a flavorless gel film that coats the mouth, providing a lasting relief from even the most persistent dry mouth symptoms. Sodium Hyaluronate, a compound, the body makes naturally is the main ingredient. So be sure to use discount code S S30 save 30%, give Lubricity a try and feel the difference.

[00:16:10] Lupe: [00:16:10] Until next time sip constantly and stay hydrated.

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