Sjogren's Strong

Introduction

New Support Groups

Lupe and Brian share some exciting information about new support groups. The first being with the Sjogren’s Syndrome Foundation of America and the second a MeetUp group called “Chronically Active”

New Support Groups

Lupe and Brian share some exciting information about new support groups. The first being with the Sjogren’s Syndrome Foundation of America and the second a MeetUp group called “Chronically Active”

Trans_New Support Groups

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

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

[00:00:05] Lupe: And this is the Lupe.

[00:00:06] Brian: And she’s a little giggly today.

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[00:00:08] Lupe: I don’t know why, it just this happened.

[00:00:10] Brian: And this is your weekly podcast discussing how to live an active and healthy lifestyle, despite a diagnosis of Sjogren’s.

[00:00:16] Lupe: How’s everybody doing today?

[00:00:18] Brian: Hope y’all are having a great week. I just said, y’all.

[00:00:21] Lupe: Oh no! You’re probably get into that from your kid.

[00:00:25] Brian: I am. My daughter who hates the fact that I point out, she’s picking up a Southern drawl, is tweeting with a Southern drawl. And I was laughing and hard and can’t wait to tease her later this evening.

[00:00:38] Lupe: She’ll be teasing you.

[00:00:40] Brian: Probably. So, what’s going on?

[00:00:43] Lupe: A few things that are going on with Sjogren’s Strong and we wanted to share that with you.

[00:00:49] Number one, our very own, Brian, he was asked by the Sjogren’s Syndrome Foundation, to lead a Spouses and Partners Support Group.

[00:00:58] Brian: That is right. And I graciously accepted. And I want to thank the foundation for entrusting this to me.

[00:01:06] And it’s coming together. And first and foremost, if you are a spouse or a partner that is supporting somebody with Sjogren’s Syndrome, what you need to do to get involved, at this point in time is dial, get your pens and paper out, and if you’re driving, please don’t. These numbers and links will be in the show notes below.

[00:01:27] But you need to call (301) 530-4420, extension 203 and asked to be put on the list for the spouses and partners support group. Or you can email the foundation, the email address is ssf@sjogrens.org and again, ask about the spouses and partners support group.

[00:01:52] It is supposed to be rolling out in January of 2020. And I’m excited to, uh, get this ball rolling. And start engaging with those, like myself, supporting somebody with Sjogren’s.

[00:02:04] So, um, I’m eagerly anticipating learning from you. And it being a collaborative group where we can learn from each other. So, excited about that.

[00:02:15] Lupe: Is it going to be over the phone or is it going to be a teleconference?

[00:02:19] Brian: As it stands right now, it’s going to be over the phone. So, there’ll be a conference call number, you can dial in and I’ll be leading the charge.

[00:02:27] However, everyone will have the opportunity to speak and pitch in, and I’m a very collaborative person, so I will make it so. And again, if you’re not ready to talk or share, you can just sit back and listen and learn from others.

[00:02:41] Lupe: That’s exciting. That’s a cool thing for you to do.

[00:02:44] Brian: Again, I feel honored that the foundations and trusted me with this. This is pretty cool.

[00:02:49] There are a few other phone in support groups that the foundation runs in areas that don’t have enough population to support an in-person group. Or there is a, I don’t want to say youth group, but a younger, but a phone in group and Facebook page for those twenties to thirties with Sjogren’s because they’re concerns, and questions are much different from an older individual.

[00:03:16] Lupe: Right, cause they’re dating.

[00:03:17] Brian: Right. So, planning a family. Exactly. Exactly.

[00:03:20] Lupe: Right. Right. Makes sense.

[00:03:21] Brian: So again, not the first go around with a phone group. First time of the spouses or partners group, which I’m excited to, uh, lead the charge.

[00:03:29] Lupe: I’m excited too. I’ll be listening in. Aha, just kidding.

[00:03:33] Brian: No, she won’t.

[00:03:33] Lupe: I’m kidding. It’s only for spouses.

[00:03:36] Brian: I forebode her.

[00:03:37] Lupe: You forbade it?

[00:03:38] Brian: You’re foreboded.

[00:03:41] Lupe: Right on.

[00:03:42] Brian: And the next thing that we want to announce is something that Sjogren’s Strong is sponsoring. And unfortunately, if you don’t live local, at the present time, you’re not going to be able to take advantage or participate. Unless you want, you know, build up those frequent flyer miles and fly in. But I doubt that will happen.

[00:04:05] Lupe: We created a group, a Meetup group called Chronically Active, and that’s for those people that want to start being a little bit more active, walking, running, jogging, whatever it is. Anything you want to do that you don’t want to do alone, uh, we’re creating a community for that.

[00:04:27] Brian: And yes, this is a group that we’ve started on Meetup. There is a page on SjogrensStrong.com. And that URL will be in the links below. However, it’s going to be sjogrenstrong.com/chronically-active. And we’re going to share upcoming events and things we’ve learned along the way there.

[00:04:47] Now with all of that, having been said, if this is as successful as we anticipate it being, we’re hoping to kind of, you know, maybe roll this out. Find somebody that wants to lead a group in their area under the Chronically Active banner, you know, hold activities in your area.

[00:05:07] Now we’re starting off with small walks and we really kind of need to gauge the fitness level and what people can do and be comfortable doing. But I anticipate our activities being somewhat multifaceted.

[00:05:21] We can start at a local park and we can just walk around the park. And for those that are done after a lap or two, are done. For those that want to keep going, we can head up a trail and extend the day.

[00:05:35] We want to make this as inclusive as possible. However, you know, we need to caution everybody not to overextend themselves and to listen to their bodies. And when they’re done, they’re done and that’s okay, but we’re out together doing something.

[00:05:52] Lupe: No man is left behind. It’s going to be fun. Half a mile, a mile, whatever it is you can do. And if you feel you have to turn around, turn around. And then, you know, we’re probably not going to do it every week, maybe a couple of times a month, maybe once a month, depending on the participation, and we’ll take it from there. But, um. I think it’s going to be fun.

[00:06:16] If you’re out and about and you’re doing something exciting that you would like to share, hashtag chronically active on Instagram and we might share your post on our page, because it’s going to be community.

[00:06:28] Brian: Yeah. We’re really trying to build a community for those with chronic illness around still being active. So, this is not Sjogren’s Syndrome specific. This is any chronic illness, kind of expanding beyond Sjogren’s, there.

[00:06:43] But you know, Lupe has been diagnosed with Hashimoto’s now, which is a second chronic illness. And we feel it’s time to expand that and bring people together, in person. Again, once or twice a month and doing something fun. And you know, it might be the Ronald Reagan Presidential Library. It might be the Getty Center Museum.

[00:07:06] Lupe: Oh, boy, the Getty.

[00:07:08] So it’s not all going to be outdoorsy, hiking in the dirt and the woods. However, we will be together, and as Lupe stated, no one will be left behind. Somebody will lead. Somebody will follow. You know, we want it to be a safe, fun experience for everybody.

[00:07:24] And that we all know what each other is going through. That you don’t feel embarrassed because you need to rest.

[00:07:31] Um, I wanted to share a little something, about a year ago, when we were in school taking photography. We went to, Brian, correct me if I’m wrong, the Huntington Library?

[00:07:42] Brian: The Huntington library in Pasadena.

[00:07:44] Lupe: Right, I was going to say Huntington Beach, but that’s not correct. The Huntington Library in Pasadena, and it was summer, and it was really hard. I’m going to say about maybe 85-90. For me, it was really hot, and I knew it was going to be hot and I prepared my body. I took a backpack with water and cool clothes and bandanas and hats. But we were in the Japanese garden?

[00:08:10] Brian: We were.

[00:08:11] Lupe: And we were walking out concrete, and I just felt myself, like, I couldn’t breathe. I panicked and I didn’t want anybody to see me, because we were a larger group, although, we all knew each other, and we were friends.

[00:08:24] So, what did I do? I kind of segregated myself, like an injured animal, right, for lack of a better term. And so that’s what I did. And Brian’s going crazy, looking for me.

[00:08:35] I was looking for water. Because I usually carry like a bandana, that I could wet, drape over my head and my neck. But instead of asking somebody for help, because I felt like I couldn’t breathe. I found a safe space because I don’t even know if I was under a tree or shade. I just knew I needed to rest, sit, get away from people.

[00:08:54] And then all of a sudden, Brian, I didn’t even think to call her text. I didn’t even know where he was at, because I was in such a panic. And then my phone rang, and I don’t know how he found me, Brian.

[00:09:05] Brian: Yeah. I found her on a bench in the shade and you know, immediately got water in her.

[00:09:09] Lupe: Crying.

[00:09:10] Brian: She was, she was not in a happy place.

[00:09:12] Lupe: I was crying.

[00:09:13] Brian: You know, and I think part of that was more out of embarrassment. Because we were with fellow students and it was a large group. But ran in immediately, got more water for her and got her cooled down and comfortable.

[00:09:25] Took some of the weight out of her pack and, and loaded it in mind, if I’m not mistaken. And got her relaxed and cooled down and water on board, to the point where we were able to finish the day, with the group.

[00:09:38] Lupe: We were, um, but they also had buildings there with AC and arts and all that cool stuff. And we went in for a while until I cooled down, to the point that I was cold. So that’s when I knew I was ready.

[00:09:53] But my point, for sharing that story, is that nobody is left behind. We all know what each other is going through, so there’s no need to be embarrassed. We will stop and take breaks. That’s the kind of community we want to create. So, everybody will feel comfortable.

[00:10:11] Yeah. And if you’re the A type personality that, uh, is going to want to continue on by yourself and not stay with the group, that’s on you. But you know, we’re not going to allow that type of behavior to make somebody else feel less and that they’re not included. This is a going to be a group activity, to where we all stay within close proximity.

[00:10:32] Brian: We can have a leader. And we can have a trailer. Um, which odds are we’ll be me, which is fine. And making sure, you know, that last person is, is at least comfortable and or in a position where we, they can rest, and we can swoop back and grab them. And you know, make sure everyone gets off the trail and home in a safe manner.

[00:10:52] Lupe: So, we’re excited about that. I am actually going on vacation without Brian. I’m going with my parents to Mexico, the week after Thanksgiving or following Thanksgiving. And we…

[00:11:06] Brian: No, we’re not. Our first activity will be when Lupe returns, before Christmas though.

[00:11:14] Lupe: Err, okay. That’s what I thought. That’s what we had talked about. But anyways, had that, I would sneak in an activity before I left, before I go, but, uh, that would be too soon.

[00:11:23] Brian: Aye, aye, aye, aye! So, let’s see, you’re leaving on Monday and did you start packing.

[00:11:30] Lupe: Oh, my goodness.

[00:11:31] Brian: And you really think you’re going to do something on the weekend.

[00:11:33] Lupe: Brian, you’re trying to stress me out because you already know I’m stressed out. Because I have no idea what I’m taking. I haven’t even started packing. And I’ve known for about a month and a half, maybe less that I’m going. And I’m stressing out because I don’t know what suitcase I’m taking. I don’t know what clothes I need.

[00:11:54] Because I always over pack. Because, oh gee, it’s going to be hot. It’s going to be cold. I’m going to need a jacket. I’m going to need some shorts. What do I take? So, I ended up over packing. And then when I’m, wherever I’m going. I don’t get out of the same pair of jeans. Right? So now I have all this extra stuff. So, yes, actually shame on you, Brian, for stressing me out, already.

[00:12:16] Brian: Shame on you for thinking you’re going to do something, not even packed yet.

[00:12:21] Lupe: I want to do something together with my peeps. But actually, I am stressing out a little bit because again, what am I packing. I don’t want to forget anything. What’s the weather going to be like? Am I going to need a humidifier? Because lately my throat and my eyes have been really, really, really dry, to where I need to have the humidifier on all the time.

[00:12:44] So I might have to go shopping to buy a…

[00:12:46] Brian: Say it ain’t so.

[00:12:47] Lupe: Portable humidifier. But, but, but, I’m very excited to share that I purchased a pair of glasses from Ziena Eyewear. And I am hoping, with all my heart, that they arrive on time, because, for a couple of reasons.

[00:13:06] I want to try them out on the plane. Because these glasses have like a protective moisture seal that goes around the glasses, around your face and it creates this barrier.

[00:13:18] Brian: And hopefully you’ll have him for the plane ride. Because that recycled super dry air on the airplane.

[00:13:25] Lupe: So, for the airplane, and then I don’t know what the weather’s going to be like. Although I think it’s summery over there too. So, I can’t wait.

[00:13:33] And after I use the glasses for a while, then we’re going to have Ziena on the show and we’ll be talking about pros and cons. And from what I’ve read, they’re all going to be pros. But you know, I want to talk about my experience. So, I’m excited to share that with you guys, in a few weeks.

[00:13:47] Brian: Yeah, so again, a lot of cool, exciting news. And Lupe is going to be traveling. The two new groups, one being ours with Meetup. And the second one being the foundations group.

[00:14:00] All good stuff. We’re excited to get the ball rolling on all these things.

[00:14:04] Lupe: So, Meetup, we are at Chronically Active and on Instagram, we are also  @chronicallyactive. So, come on over.

[00:14:15] Brian: And again, there will be links in these show notes below. You’re welcome to join in and have some fun with us.

[00:14:22] Lupe: Absolutely. We’re definitely looking forward to it.

[00:14:25] Until next time, sip constantly and stay hydrated.

Links

Sjogren’s Syndrom Foundation “Spouses & Partners”
Call 1 (301) 530-4420 Ext. 203 or send an email to ssf@sjogrens.org
Should soon be listed – https://www.sjogrens.org/home/get-connected/support-groups/specialsupportgroups

Chronically Active MeetUp https://www.meetup.com/Chronically-Active/
Chronically Active on Sjogren’s Strong https://sjogrensstrong.com/chronically-active/

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