Sjogren's Strong

Introduction

2019 L.A. Area Walk for Sjogren’s

Brian and Lupe wrap up the 2019 L.A. Area Walk for Sjogren’s this past Saturday.

2019 L.A. Area Walk for Sjogren’s

Lupe & Brian wrap up the 2019 L.A. Area Walk for Sjogren’s this past Saturday.

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

Brian:    This is Brian.

Lupe:     And this is Lupe.

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

Lupe:     And today we are going to talk about the LA Area Walk for Sjogren’s.

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Brian:    It was this past Saturday and I enjoyed myself, Lupe?

Lupe:     And I enjoy myself, too!

Brian:    You know, we actually showed up pretty early to help set up and organize and get things together, but the time flew.

Lupe:     Next thing you know it was time to go home.

Brian:    It was, it was pretty amazing.

Brian:    We first want to start off by thanking those who donated and supported Team Living Sjogren’s Strong in raising funds for the Sjogren’s Syndrome Foundation.

Brian:    Mr. and Mrs. Meats from Washington state. Thank you, Meats family.

Lupe:     Megan Azzano. Hi Megan. I actually met Megan on Instagram. We’ve become really good friends. Thank you Megan and send us some apples.

Brian:    Mr. and Mrs. Bailey, Huntington Beach, California. We appreciate the both of you, always.

Lupe:     Dr. Wong from my Guiltless Treats.

Brian:    Todd De Voe, the host of EM Weekly.

Lupe:     Dale and Mitsi Wiltse, I wish we could buy some Chapstick with that money.

Brian:    No Chapstick. And Dale and I are working on an episode, um, for the future, as well. So I look forward to finishing that up a Dale and getting that out to everybody.

Brian:    I would also like to thank Vic Virginian from Titan HST, which is a mass notifications app for emergency situations. Vic, we appreciate your donation.

Brian:    And a special shout out to Jay from Jay Patrick Photography. Jay and I actually met on LinkedIn a few months ago. And for those of you who don’t know, LinkedIn has a mentorship program and Jay reached out and asked if uh, you know, him and I could hang out from time to time, which we have been.

Brian:    He is a surfboard shaper, which, I mean, growing up here in Southern California making surfboards is kind of like a dream job. But he’s actually getting ready to embark on a very cool journey, where he is going to travel to different countries, learn how and shape surfboards. All while capturing video and still photography to tell the story of how the craft is different from country to country. And I think that’s really, really cool.

Brian:    And Jay and I get together from time to time and I review some of his photography work and we just sit and talk life. But Jay, thank you so very much. I actually received his photos today. There’ll be heading over to the foundation most likely tomorrow. So thanks Jay. And there’ll be a link to Jay’s Instagram in the show notes.

Lupe:     And Jay, I also wanted to say thank you very much. Uh, I was telling Brian what a nice young man you are. So, thank you for being so giving and donating your time. And I can’t wait to see the pictures.

Brian:    Yeah, Lupe hasn’t even seen ’em yet.

Lupe:     Okay, so the event I’m going to say was double the size of last year.

Brian:    Yeah, I’d say that’s about right. It was a little more spread out this year.

Lupe:     I think this year was really cool because “Ask the Experts”, I don’t know if it was three or four tables, but they had their own area, which was a little bit private. So you could go ask them and you had a lot of privacy.

Brian:    Um, the registration area was separated this year and um, had its own area, which was kind of nice because it removed some of the chaos from the happenings. Um, just everyone showing up and you know, getting registered and getting their shirts and all of that. Uh, I thought that was a great call.

Brian:    And let’s take this opportunity to thank Jessica Levy of the Sjogren’s Syndrome Foundation. She is in charge of these events and marketing and did an awesome job setting all of this up. She lives out of state, so had to coordinate logistics and quite a bit and thank you to you Jessica.

Lupe:     Great job!

Lupe:     So for the picture area there was a lot of props. There was a big backdrop that um, I posted a picture on Saturday. Since, now, we have Jay’s pictures, we’re going to be posting more and more pictures throughout the week. And yours truly, I was managing the Circle of Strength.

Brian:    Which was actually a really cool thing. Everyone remembers the paper strips that you, you know, turned into a circle and would create these chain links. Everyone was asked to write down people that support them with their journey with Sjogren’s.

Brian:    So whether it be a doctor, a dentist, your whomever, loved one, you’re the neighbor that checks in on you. But people created these circles of strength and I saw a few people wearing them on the walk and people took pictures with them. I find stuff like that awesome. Because it, amongst the excitement of being at the event, it causes you to pause and reflect back. And it’s inspiring to me when I’m forced to pause and reflect back on those who, you know, impacted my life. So I think that’s a cool, cool thing. And people were making signs.

Lupe:     Yes. I was going to say that people were making signs. So the foundation brought paper plates and different color markers and glitter and stickers and sticks. And when you were done decorating your plate. You know, I wrote on mine, I am Sjogren’s Strong. People wrote the names of who they were walking for and it was really neat. A lot of people really liked that.

Lupe:     They both were a big hit. There’s was a couple from Washington. I’m so sorry, I don’t remember your name, but it was a young couple and they flew in from Washington and I was talking to them for a while and they did the circle of strength. They really loved that idea. And I met him for the first time and I actually met a lot of people for the first time. A lot of people with Sjogren’s, a lot of supporters of patients with Sjogren’s. Uh, there was a lot of community, a lot of love and community.

Brian:    Yeah, I think that was really evident and maybe more so this time than the last or we were just a little more cognizant of it this time than last. But um, that couple from Washington state, he’s an officer in the air force. Um, there actually might be moving a little closer to out to the Vegas area, being relocated via his military service.

Brian:    But it’s really awesome to see these people come together. And yes, forgive us for not remembering names. There was a gentleman that came up whose daughter might have Sjogren’s who was a listener of this show. And it’s awesome to interact with people one on one outside of social media, which is where most of our interactions happen. It’s heartwarming for me to get out and meet people and talk to them and help the foundation with an event like this.

Lupe:     Definitely. I think most of the time I was at my station because a lot of people wanted to do the plates and the circle of strength. So a lot of people actually came up to me and introduced themselves and they said that they’re listeners and they thanked me so much for, you know, for putting my story out there and helping them. And they don’t feel so alone. So, that was really hot warming for me and I really appreciate them doing that. Thank you everybody.

Brian:    You know, and at an event like this, it’s really hard to feel alone. You’re just surrounded by people that are feeling and experiencing the same thing you are. Whether it’s diagnosed with or supporting somebody with Sjogren’s. And it’s heartwarming, it really is. And Steve, the CEO of the foundation was out.

Lupe:     And Susan.

Brian:    She was out. So it was great to see everybody come together for the event. Um, a lot of people have reached out, I wished there was one near me. I will link in the notes, the page of events from the Sjogren’s Foundation’ website. And at the very bottom of that, there is a statement that if you would like to help with an event in your area to call.

Brian:    And I believe it’s Jessica, start one. The foundation is wonderful in helping this. I believe Susan Barajas was the chair of this event, but on all the calls, Jessica was leading the charge and took control and people jumped in, pitched in, volunteered to do, volunteer to find, to get, to bring. And that team effort, you know, many hands make light work.

Lupe:     So please reach out to the foundation, let them know where you live and tell them that you would like an event in your area. Maybe it’s not going to be the immediate area, but the larger cities.

Brian:    Jump on the Facebook group, Living Sjogren’s Strong and ask where people live. Ask does anybody live in X area and see how many people are already in the group that might help you, help the foundation get a walk in your area.

Lupe:     Um, on that note, I had a gal reach out to me on Instagram and she told me that she was part of a group on Facebook, I’m assuming. There was about 5-7 gals that they connected in the group. And they meet up every couple of months at a restaurant and they just became friends and they talk about their Sjogren’s. So, they created there, I don’t want to say support group, but they don’t have any event in their area, but they created their own little gathering. So you could do that. That’s an option.

Brian:    Definitely. And the foundation is there to support you in all of this, as well. If you have Sjogren’s and you don’t have a support group in your area that the foundations part of, call them up, get them involved. They’re more than happy to help create a tighter community, as well.

Lupe:     Yeah. It’s all about creating community. It’s about creating community and meeting people with Sjogren’s so we don’t feel alone.

Brian:    So Lupe talk about the vendor area a little bit. I know you briefly ran through there because you had other duties and responsibilities, um, like I did. Honestly I didn’t even get into it. I was walking around the backside getting from one side to the other more or less. But I know Ziena Eyewear was there, you were kind of excited about talking to them.

Lupe:     Yes, Brian, I was busy cause I had my duties. I had my station, I was manning but um, I did sneak away and I did talk to a handful of vendors and um, I was most excited about Ziena Eyewear. And I did talk to the gal, Martha was her name. And I’m going to reach out to her because we talked about having her on the podcast . And talking about the glasses.

Lupe:     Because what they are, they’re just regular frames, right? They have like a silicone gasket that goes around the frame and it creates a moisture barrier. And what she said was you put a couple of eyedrops in your eye and you put on your glasses and this silicone gasket, your eyes stay moist for several hours. So I was excited about that. And they’re local, they’re in Ontario, I believe. And we have to make a trip out there.

Brian:    Definitely. And this silicone gasket attaches to the inside of the glass frame via a little magnet so it pulls off so you can rinse it off or wash it off really easily. And it just creates a seal around the frame to your face, which is pretty ingenious

Lupe:     And you actually have to try them on because everybody has a different size and shape face. And so there’s different styles and they won’t all fit your face. They won’t all create that seal. So you definitely have to try them on.

Brian:    And you can get your prescriptions put in, correct.

Lupe:     Yes, they actually pull your prescription there. And I did make sure of that because one time I went to a store and I really liked the pair of glasses. And they told me, oh yeah, we could put your prescription but we don’t do it here. You have to take it to your doctor. So I bought the frames and when I took him to my doctors, so they could put the prescription, they’re like, no, we can’t do that.

Brian:    Did it have to do with your progressive, transition?

Lupe:     No, no, no. It wasn’t that. It was like the frame was kind of rounded, beveled and they couldn’t do it or didn’t want to do it. And so nobody would do it. So what do I have to do? I had to take back the frames, you know. So you don’t want to do that either. So I made sure. And so you could actually walk in with your prescription and they’ll take care of it there.

Brian:    And do they do progressive and transitions and all of that stuff?

Lupe:     Yes. Yes. They do regular reading glasses, progressive sunglasses, you name it, they can do it.

Brian:    I think it would be pretty cool if you were in an office environment where there’s air conditioning. So the air conditioning is not drying out your eye all day.

Lupe:     Well, interesting that you say that because I am right under a vent and I had to move my computer because the air was coming into my eyes and it was drying them, to a point that I couldn’t focus. Everything was blurry. So again, that’s why I’m excited about it.

Brian:    Oh, very cool.

Brian:    Um, there were a few other vendors there we’re going to, um, try talking with and see about getting them on the show, as well. But um, all in all, I think it was a great success. It was bigger than last year. It seemed to be a younger crowd this year. There were quite a few people with Sjogren’s and those supporting them, um, that were younger, in my opinion, more so than last year.

Lupe:     Yes, I agree with that… there was.

Brian:    That’s a testament to time to diagnosis being cut in more than half. More people are realizing this at a younger age.

Lupe:     And this was the second annual. So next year is going to be in October again, the third annual. So start making plans.

Brian:    Definitely.

Lupe:     Um, a lot of people said, oh, I wish I would’ve known sooner. So, what we’re going to do for next year, we’ll start posting really early.

Brian:    Yeah, as soon as we have a date or any information, we’ll be posting it up and we’ll probably build page out on the Sjogren’s Strong website too, just for this event and do a better job promoting it next year than we did this year.

Lupe:     But definitely mark your calendars for October because it will be in October.

Brian:    Yeah. And again, there’ll be a link to all events that Sjogren’s putting on in the notes to this show. So check it out. There might be something close to you that you can get to before October next year.

Brian:    So again, we want to thank the Sjogren’s Syndrome Foundation for putting this wonderful event together. It really helps bring people together and it creates community. And I think that’s very important for us Sjogi’s. Because like Steve mentioned during his episode, it is a very lonely disease. Because not a lot of people know about it. And it’s not really something that we talk openly about. Because nobody understands. So this community is great. These events are great because you get to meet other people that are going through the same thing you’re going through, maybe not in the same way, but we all go through the same thing.

Brian:    You’re surrounded by people walking the same miles in the same shoes as you are.

Lupe:     Everybody understands!

Lupe:     So again, thank you to everybody and I want to give a big shout out to “Kick’n for Katy” because she raised over $2,000 for the foundation, a big whoop whoop for Kay.

Lupe:    Until next time, sip constantly and stay hydrated.

Links

Sjogren’s Syndrome Foundation “Events” – https://www.sjogrens.org/home/get-connected/ssfeventcalendar

Jay Patrick Photography

Banner Image, thank you Jay
Instagram – https://www.instagram.com/jaypatrickphotography/

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