What are you doing to pass time these days? A few updates and Lupe impersonating the Mayor of Los Angeles.
Lupe & Brian: [00:00:00] Welcome to another episode of Sjogren’s Strong.
[00:00:03] This is Brian.
[00:00:04] And this is Lupe.
[00:00:05] And this is your podcast discussing how to live an active and healthy lifestyle despite a diagnosis of Sjogren’s.
[00:00:12] And speaking of while weekly, we wanted to apologize for not having an episode last week.
[00:00:18] You know, the days just kind of run together.
[00:00:20] Yup. I’ve been working from home, don’t even get out of my PJ’s. So, I just didn’t realize what day it was.
[00:00:26] She dresses up from the waist up.
[00:00:29] Yup. Just like the commercials you see on TV.
[00:00:32] So with the world being kind of topsy turvy, the way it is, um, we’ve compiled a couple of things for this episode that we wanted to share with you.
[00:00:42] Have you guys checked out the new website for the foundation?
[00:00:46] It’s pretty cool.
[00:00:48] It’s very user friendly. It’s very cool and hip. And the best thing that I love about it is that, I don’t know what it is, but you could, uh, it’s for your phone. What’s the word I’m looking for?
[00:01:00] It’s mobile first.
[00:01:02] Yes. It’s very cool.
[00:01:03] Um, very well laid out, easy to navigate. Um, they did a really, really good job. So, everybody write the foundation, give him a call, give him a shout out on social, let him know what a cool site it is and let them know that your favorite Sjogren’s podcast should be listed as a resource.
[00:01:22] Oh, shoot! That’s right. That’s right. Just call them and let them know.
[00:01:28] Uh, just kidding. Don’t do that. They’re busy, they’ve got better things to do.
[00:01:32] I was going to say something about it, but, um, it totally slipped my mind.
[00:01:36] You know, one cool section they have on there, where she’s thinking, they actually have a Sjogren’s and COVID dedicated page right now. So, all of this information is obviously vetted through their docs and really good place to go and check out what’s going on in the world of COVID and Sjogren’s.
[00:01:53] You know what, speaking of that, um, while I was browsing through their website, I noticed that they had ah, what’s so what I’m looking for?
[00:02:04] I noticed that they had, okay, so I was browsing through their site and I noticed that they had an article about the Plaquenil shortage
[00:02:14] And Kaiser. So, first off, really cool, the foundation has written letters to American Farmer Colleges Associations and the drug manufacturer and Kaiser. I guess Kaiser was not refilling prescriptions for Hydroxychloroquine, and they would apologize.
[00:02:35] And obviously for those suffering with Sjogren’s that are on this drug and respond well to this drug, that’s a big deal.
[00:02:44] And on that note, I am so glad I don’t have Kaiser. I got a new job, I’ve been there a month, which is a really weird time because I’ve been training from home. It’s been tough, but not here nor there.
[00:02:55] What I wanted to say was I had Kaiser before and I’m glad that I don’t anymore. And you know what? Because of that reason, I will never look at Kaiser again.
[00:03:05] I would have been extremely upset if prescriptions were refused.
[00:03:11] Well, because they’d be prescribing it, right?
[00:03:14] Right. You’re paying them good money for doctors. And yes, we understand, if you don’t take your Hydroxychloroquine, you’re not going to die. However, your quality of life would dramatically change. And Lupe’s part.
[00:03:27] Absolutely. You know what, I’ve said it many times before. I’ve taken myself off of Plaquenil a couple of times and it’s not a good move for me. So, I definitely don’t do that anymore. But you know, to Brian’s point, I was thinking about that earlier.
[00:03:45] Yes, we are not going to perish if we don’t take our Plaquenil, but what is that going to do to our quality of life? You know what I mean? So, I’m definitely, am willing to suffer for the needs of many, right. If it’s just going to be temporary, but I mean, I really don’t want to, but anyways.
[00:04:03] Yeah. Fortunately, if you’ve listened back to some of earlier episodes, we’ve talked about getting extra prescriptions and having a little stockpile of your meds in case of an emergency, and this is…
[00:04:16] An emergency!
[00:04:17] An emergency.
[00:04:18] A global pandemic is definitely an emergency. I believe I have plenty of pills that’ll last me for a while. And I have a stash in my purse, a stash in my car. You know, you don’t know where you’re going to be when you need them.
[00:04:32] Yeah. You know, we planned it and prepared for, you know, a couple of weeks of recovering from an earthquake, and this is much grander than that, but I think we’re in a good spot still.
[00:04:42] Yeah. Yeah. Anyways, so that! But you know, are we really in trouble without Plaquenil? What I’m saying is, we are going to get it right?
[00:04:50] Yeah. No, it’s being mass produced now. They’re going to get it back on the shelves. Um, they are over producing just for the COVID issues, while they’re producing what they need to produce to get back into the market for those suffering with an autoimmune.
[00:05:07] However, there’s many cogs in that wheel. And if Kaiser could get a shipment and go, well, we’re going to hang onto it for COVID or you know, allocate it to COVID and not it’s autoimmune patients.
[00:05:20] That’s messed up!
[00:05:21] That is. I completely agree. But again, the needs of the many outweigh the needs of the few.
[00:05:29] Um, support groups, the foundation just put out a note stating all support groups are going to be put off until after May 15th. So, if you were planning on going to an upcoming meeting, I don’t think any were even calendared. Um, I know they’ve canceled the walks, temporarily and we’re really looking forward to things getting back to a normal. So, we can get back to support groups and, um, you know, the walks and all of that.
[00:06:02] I miss you Susan Barajas. Hope to see you really, really soon.
[00:06:05] And hope you had an awesome trip.
[00:06:06] Yeah! I can’t wait to hear all about it.
[00:06:10] On some cool news, the Sjogren’s Patient Conference is back on. It is scheduled for June 26th and 27th, right now. And hopefully everything is settled down and we will be able to do that. It is in the same venue in Phoenix, Arizona. And like I’ve said before, if it’s on, we will be there.
[00:06:31] Most definitely.
[00:06:32] Hopefully we’re not all in masks and gloves.
[00:06:34] I have a feeling we will be.
[00:06:36] Bathing in hand sanitizer, however, if it’s on, we’ll be there.
[00:06:39] We’re going to be saying hi with that elbows and our feet and our knees. And you know, a wave.
[00:06:46] Yup. Um, so we’re excited to see that that is back on. It’s “a hope” of things getting back to normal, and I think we could all use a little bit of that right now.
[00:06:56] I think it’s going to be a while, but, um, let’s hope for the best.
[00:06:59] And we also want to talk about what we’re doing during this pandemic. Like, you know, what we’re doing to sanitize.
[00:07:09] Grocery shopping is really a chore.
[00:07:12] Oh my goodness.
[00:07:13] We actually set up a table in the backyard and bags come out of the vehicle onto the table, things are unbagged. And we’re gloved up. We’re massed up. Stacked on the table, bags, because we use the reasonable ones, go straight into the war, along with our outer garments that we wore.
[00:07:30] And then we sit there and sanitize the exterior of everything that we bought, before it even comes into the house.
[00:07:37] So, a couple of weeks ago, we went to trader Joe’s, and you know, we’re trying to be as green as possible, save the planet. Whoop! Whoop! And, uh, so we took our canvas bags, that we actually bought there.
[00:07:49] And when we’re walking inside, they give you a little pump of a hand sanitizer and they tell us, um, we won’t be able to handle your bags, but you’re welcome to bag groceries, which we always do anyways.
[00:08:05] But, uh, I mean, it’s gone to that, right? They don’t even want to touch stuff that comes from the outside.
[00:08:11] You know, one of the things we did to reduce a touch point was we’re no longer using carts. We’re actually taking food and putting them in our bags. So, then we get to the register and we had to take our food out of the bag, put it on the counter, and the counters aren’t that big.
[00:08:27] So Brian and I tag teamed. I was unpacking the bags and he was repacking the bags.
[00:08:34] After it all got scanned.
[00:08:36] But anyways, they really like us there because we’re regulars and they already know us and, um, we always help them.
[00:08:42] I wish I will give us a discount though, right, for helping them.
[00:08:46] For finding ah, what’s the monkey’s name?
[00:08:50] Finding Maurice.
[00:08:52] For 10 years we’ve been going there, and I never noticed Maurice until a couple of months ago, which was pretty cool.
[00:08:57] And now when she has a sweet too, she’s like, I found Maurice and they give her a lollipop.
[00:09:03] The first time they gave me this look like really, lady. Yes, please, I want my lollipop.
[00:09:09] And then she says, I want a sticker too.
[00:09:12] Funny stuff.
[00:09:14] Um. But yeah, just some of the craziness of what we’re doing to get along in the world. I mean, I’m still coming into the office. I work by myself. Um, there might be two other people in the office that use the same kitchen area, but I’m not using the kitchen area.
[00:09:35] I’m bringing a protein shake. I’m mixing it with water. I’m doing my best to stay away from everybody and reduce touchpoints. I do go get cups of coffee throughout the day. But I have a little spray bottle with rubbing alcohol in it, and I’m constantly spraying things before I touch them and wiping them off and touching them, doing what I need to do. And then I come back into the office where, which I keep extremely sanitized right now.
[00:10:03] I got here, to the office, and I told Brian, I texted him and I said, I’m here, I’m scared, come get me. I didn’t want to touch anything. Nothing.
[00:10:11] So I walk around with this little spray bottle of rubbing alcohol and a few paper towels and keep things clean and tidy before I touch. And after I touch and I have Lysol wipes, I disinfect the studio with and spray alcohol on the mic covers and cords and cables. Most of my customers know not to touch the mix or any of the equipment. But I still sanitize, wipe everything down.
[00:10:33] But yeah, it’s definitely really weird because I’m outside and I feel like everything’s dirty, there’s germs flying everywhere, and I start itching. Oh my God. You know, it’s like I’m at home and I’m so bored, cabin fever. I want to get out of the house, but then I get out of the house and I start itching cause there’s germs everywhere. Come on, I’m not the only one. Right?
[00:10:53] No, you’re not. You’re not. I mean, you know, the other day, I noticed myself not being close to other cars. It’s like I want six feet and I’m like, what if somebody sneezes outside their window and my windows down? What if, and I like driving with my window down. I like the quick, especially right now, the weather is cool. It’s rainy and just damp. And I love cool crisp air. And I’m like, Ooh, I better back off. Ooh, I better change lanes.
[00:11:24] It’s funny that you say that because I haven’t driven for three weeks and today on my way over here to the studio, I had my windows down because it’s sunny right now. It’s been raining and so it’s sunny right now and I’m like, Nope, I should roll up the windows, because you don’t know, those germs are everywhere.
[00:11:41] It’s funny what we think of, I mean, just touch points, you know, I’ll go get gas before I get out of the vehicle. I put a mask on, I put gloves. And then it’s okay, what did I touch? What didn’t I touch? I’m spraying, rubbing alcohol on the door handles and gas pump before I even touch it with a gloved hand. And maybe we’re taking it overboard, but I would rather be safe than, sorry.
[00:12:06] Yeah. And we live in Orange County, it’s not mandatory for us to wear a face mask, but we’ve been wearing one outside. In LA, it’s mandatory, Riverside and San Bernardino, I believe also.
[00:12:20] But, so anyways, we’ve been wearing masks and you know what I was thinking also, my Ziena glasses that have that moisture barrier, they’re not made to protect your eyes like that, but they got help, right? So, I’ve been wearing them.
[00:12:34] Of course. And it’s all about reducing touch points, you know. I look at it as you need so many parts per million of this virus to actually take hold in your body, and I could be totally wrong. But if gloving up reduces that by 99% cool. If, you know, spraying alcohol and everything before I touch, it helps, cool. And I’m willing to go that extra mile because I don’t want to get sick and bring it home to Lupe, who’s been doing a really good job at staying home and inside.
[00:13:04] I mean, I was out on the back patio and someone walked by and coughed and I’m like, eh, you know, I held my breath and went inside, and I washed my face. And it’s just a weird time.
[00:13:14] It’s weird because if you’re walking, you know, you’re walking one way, the other person coming towards you. Your kind of just give each other this look like, oh-oh! You know, it’s weird.
[00:13:24] Everyone’s walking away from each other. Don’t want to be downwind from anybody. It is a weird time.
[00:13:31] But yeah, so masks, gloves, a little spritzer of rubbing alcohol, hand sanitizer, they’ve all become the norm. But I’m not going to wear a fanny pack.
[00:13:42] I’m not putting all that in a fanny pack, it’s in my pockets.
[00:13:45] Who was talking about a fanny pack?
[00:13:46] I’m not a fanny pack guy. I feel like I need a backpack for all this stuff.
[00:13:50] You’d look good in a Fannie though.
[00:13:51] No, thank you.
[00:13:52] You should.
[00:13:53] Not my style.
[00:13:54] That’s funny.
[00:13:55] And so anyways, when I get home from wherever, like right now, I just came here, right? But when I get home, I feel like I’m dirty and I’m going to go straight to take a shower and wash my clothes.
[00:14:07] Yeah. It’s funny coming in from outside. I mean, fortunately I won’t see, talk to or bump into another person. Coming to work, working and going to work, everything’s virtual right now. It’s just a different, different process when you get home. Clothes straight into the hamper, hamper outside shower, you just. And again, maybe we’re being overly cautious, but I would rather be overly cautious and healthy than, you know, risk it and, uh, get somebody or a loved one sick.
[00:14:41] Absolutely. Do what we can to stay safe.
[00:14:43] And we both have had people that we know, either come in contact with, somebody that’s COVID positive or have the signs and symptoms but can’t get a test or they’ve gotten tested and they were positive. And so, it’s getting close to home.
[00:15:00] I have a real good friend that works at a bank and somebody just came back from vacation, they didn’t go anywhere. They just, you know, had five, six days off. She came back, wasn’t feeling well, and they sent her home. She was working for like four hours. And Oh, by the way, I got COVID, So, they shut it down.
[00:15:20] Shut the entire branch down. All the employees now have to self-isolate. But now this person goes home to a family.
[00:15:28] You know, and it’s crazy. It’s crazy. And family, friends. I’ve known this young lady for damn near 30 years.
[00:15:39] You’re that told?
[00:15:39] Positive. Yeah. And she’s got underlying conditions, so we’ll see how she does. Our thoughts are with her and her family.
[00:15:49] Yeah. It’s a definitely crazy times, but we would like to hear from you. What are you guys doing out of the norm. Craziness. Jump on Facebook. You know, the, the foundation support groups right now aren’t happening. People can’t come together in person, but we can still come together virtually.
[00:16:08] You can follow Sjogren’s Strong on Facebook. We have Living Sjogren’s, Strong private group on Facebook, jump in the conversation. The group does a really good job of taking care of each other and offering awesome advice.
[00:16:20] Speaking of groups, I just remembered what I wanted to talk about way in the beginning of the episode, when we’re talking about the foundation.
[00:16:27] What about the support groups that you’re leading over the phone? Are those still happening?
[00:16:31] It said all support groups.
[00:16:33] Oh, but it’s more the phone.
[00:16:34] But yeah, okay. Gotcha.
[00:16:37] Yeah, no word on when our next group will be as of yet, and this is for supporters and spouses or partners of somebody with Sjogren’s.
[00:16:45] So as a reminder, the foundation changed their name, it’s no longer the Sjogren’s Syndrome Foundation, cause they’re doing what they can to get rid of the word syndrome, because it’s definitely not a syndrome. And so, they changed it to Sjogren’s Foundation.
[00:17:00] Which is really cool. Logo is different. Um, be sure to check out the website.
[00:17:05] Yeah. And if you’re not subscribed, become a member and you get a cool periodical every couple of months, I believe they changed that too.
[00:17:15] So with all of that having been said, you got anything else?
[00:17:17] I think that’s it. Um, Stay Safe. Stay Healthy and Stay at Home.
[00:17:27] She’s been watching the LA Mayor every day. He does a daily press conference and she’s like, Oh, you said you’re a great speaker. That’s how we finish it. So that’s funny.
[00:17:37] Stay home. Stay Healthy. And until next time, sip constantly and stay hydrated.
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