Sjogren's Strong

Introduction

Chronic Illness and Preparedness

The recent earthquakes in Southern CA, caused us to evaluate our preparedness supplies and we wanted to share our thoughts with you.
Preparedness is important and including your medications is very important.

Chronic Illness and Preparedness

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 having a diagnosis of Sjogren’s Syndrome.

Lupe:     So, before you asked Brian, I’m still a little sore.

Brian:    Why are you sore?

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Lupe:     Well, okay. As you all know, we live in southern California and there’s been earthquakes. We had one the 4th of July and we had a bigger one the following day. And in light of those events, I was talking to Brian and we actually inventoried and evaluated all of our supplies that we had. And I said to myself, self, we should talk about this with our listeners.

Brian:    So, what we’re going to do is talk about what we’ve done for the last 10 years and share this with you, in case you haven’t thought about this. Or a gentle reminder that maybe it’s time to take a look at your situation and, or the light bulb moment. ooh, I’m on new meds. My new meds should be in my supplies.

Lupe:     Correct. So, I, for me, as you all know, I keep my, um, my survival kit in my car and I also have a few days’ worth of supplies that I carry with me, every day, everywhere I go in my purse. Um, I have about three days, three to five days’ worth of meds at work, in my desk, top load with the meds that I have at home. Maybe I have about 30 days’ supply at home. And that’s including everything from eyedrops to the meds that I’m taking, to gels. Everything that I use to manage my Sjogren’s.

Brian:    Yeah. And that includes over the counter stuff as well. So you know, Visine type eye drops or you know, nasal gels just to keep your nostrils moist. It doesn’t have to be just prescription meds, but we keep, and not to turn this into a prepper show, but we have food and water in reserve.

Brian:    So, worst case scenario happens, we can’t get to a store. We’re going to be okay. And I think the most difficult part of this is medications. They typically have different expiration dates. You might change meds out where a doctor discontinues this med and prescribes a new med. So when those types of things happen, you need to think about the meds in your emergency kits, as well.

Brian:    So, getting a few extra days on a script and saving them up so you have a reserve is step one and then step two, getting them in your kits dating the outside of whatever box, carton, bag that they’re in. So you know, Oh, you know, it’s just a quick visual reminder. I need to give this bag some attention, something in its expiring.

Brian:    But it is good to do. And again, here in southern California we have seismic activity and other parts of the country you might be concerned with hurricanes or snow storms or tornadoes or whatnot. The floods throughout the Midwest that we’ve been experiencing here in the states.

Brian:    So, no matter what the emergency or natural disaster may be, you know, preparedness is all the same. If something happens when we’re at work, I know we’ve got three days to get her to her vehicle, which hopefully will never take three days. Once we’re in the vehicle, we bought us a good week to get that vehicle home, to where more medications are.

Brian:    But that’s the type of thinking we’ve deployed. We’ve never had to use it, other than say we go on a road trip, spur of the moment, let’s take off for a few days. Well, we know we’re good. We don’t have to pack meds with our clothes. She can just use the meds that are already in the bag, in the car and then replace them with fresher meds, with a farther out expiration date.

Lupe:     That was a lot of rambling.

New Speaker:    It was.

Lupe:     The reason why I wanted to talk about this is, me for example, and I’m just going to use this as an example. When we go on road trips or vacations or wherever we’re going, that we’re going to be out of the house for a while, it actually takes me a couple of days to pack. Even if we’re just going for the weekend. It just, I don’t know why I stress out about it. It takes me a couple of days to pack.

Lupe:     And I can’t even imagine what’s going to be going through my head when we have to rush out for an emergency. You know what I mean? For example, when the second earthquake hit, okay, we had to on the 4th of July, what was it, Brian? Just a little roller? It just lasted, it seemed like maybe 30 seconds, maybe less.

Brian:    It was over a hundred miles away from us, but by the time it got to us it was just a little rolling. Kind of felt like you were on a boat, maybe in a harbor and a little weeks going by. Any did last awhile, I would say over 60 seconds

Lupe:     And we were sitting down. So, I mean it didn’t really affect you that much when you’re standing. You kind of have that motion sickness feeling. The second one, that hit, we were at home also, we were watching TV and it started shaking and at first I thought it was Brian just shaking his legs.

Lupe:     But it kept going and going and we just looked at each other like, oh, hold up, wait a minute. And it just got progressively stronger. And then next thing, you know, cause we’re just sitting there like whatevs you know, we experienced these all the time. But then the bookshelves, they kind of started shaking stuff, started off the shelves and that’s when we just jumped up.

Brian:    Yeah. About halfway through it, there was a good jolt that took things off the bookshelf. The dogs actually got up. Our dogs are even used earthquakes. They didn’t even lift their heads when it started. But when that jolt hit, I was on my feet. Stuff started falling. Um, the dogs got up.

Lupe:     Well, my point is, in a situation like that, you just want to get to safety. The last thing you’re thinking about is your meds. You know what I mean? And meds are important, especially if you’re going to have limited access to them, regardless of whatever situation you’re in.

Brian:    I mean, your meds could become even more important if your water intake’s going to decrease because there’s limited access to water.

Lupe:     So, for me, I can go three days without meds and I’m fine. But after three days my body starts aching so bad to where I don’t even want to get out of bed. I’m in a fetal position. I’m just in so much pain. It’s very debilitating for me. So, I can’t imagine, I can’t imagine going more than three days without my meds. That’s why it’s important to have them ready.

Brian:    Yeah. And again, no matter where you live, there’s a possibility for some sort of natural disaster and or emergency. So, over the course of the weekend we did take the time to check our water storage. Everything’s intact, nothing’s been damaged all is well. Food storage, everything’s good, nothing’s expired, everything’s intact.

Brian:    And then, meds ,and something that we do, we keep some stuff in the house, some stuff in the garage, some stuff in vehicles, some stuff at work. So it’s kind of spread out, as well. So, say in our example, if the garage collapses, we still have stuff in the house. If the house collapses, we still have stuff in the garage in both collapsed. We get to work.

Lupe:     Yeah. Cause at work, they’re not connected, you know. But you don’t know when and it’s going to happen. You don’t know where you’re going to be. So, very important to be prepared, especially with your meds and water.

Brian:    Definitely. Especially water for everybody listening. You know the simplest thing to do, most of us use bleach for laundry. When that bottles empty, rinse it out quickly and then fill it with water, put the cap on tight. There’s going to be a little bleach residual in that bottle, which will keep bad stuff from growing and stick it on a shelf. There’s a gallon of water at the ready. You might taste bleachy but it’s safe to drink and you’re good to go.

Lupe:     Uh, can you just use like the bottle of Tide instead?

Lupe:     I’m like, I’m just thinking, hello.

Brian:    You can use any bottle, if it’s not bleach, rinse it out really well. But adding a couple of drops of bleach to a gallon of water is going to keep fungus and mold and stuff from growing in it.

Lupe:     That’s crazy. I never thought about that. I would, you know, I would totally use a gallon of milk. But I see where you’re going.

Brian:    Yeah. And again rinse it out. Well add a little bit of bleach. You’re good to go.

Brian:    You know and in addition we hike so we have water filtration systems. So, we can go down to storm drain runoff and pull water and filter and we’ll be fine.

Lupe:     I mean, hopefully, we won’t find ourselves in a situation, anybody, we hope nobody finds themselves in a situation where they need to filter to water but it’s good to have.

Brian:    Definitely. For you, our listeners, let us know if this episode was helpful at all, number one. Number Two, let us know what you do. Maybe you’ve got some cool tip- trick that you can share with us in the group and help us better prepare, in case there is some sort of natural disaster.

Lupe:     I don’t know if this topic applies but I think it would because no matter where you live, something can happen, Mother Nature, sometimes she gets angry and ah natural disasters happened. So, it’s a, it’s always good to be prepared.

Brian:    Definitely. Is there anything else you’d like to share?

Lupe:     I just had a thought, in addition to, your meds and water and food. Um, I think it’s also very important depending on the weather, f it’s cold, do you have blankets? Do you have jackets? Something that’s going to keep you warm, so your body doesn’t ache, because I know when I’m cold, my body aches.

Lupe:     If it’s during the summer, do you have lightweight clothes, to keep you cool? You also need to think about that. I like wearing wool socks in the winter. It keeps my bones, I’m going to say bones cause that’s where I feel my pain. Wool socks help keep my body warm and um,, what do you call it, Brian? A stocking cap? A beanie. Those things are great for me. Your socks and a beanie because warmth escapes, right from there? Take it away. Explain it.

Brian:    Yeah. When it’s cold we lose a great percentage of body heat through our uncovered heads. So, having something to cover your head is worth its weight in gold.

Lupe:     And if you are cold and you cover your head, oh my God, a world of difference.

Brian:    Yup. And that’s a good pull, Lupe. Wicking, lightweight, comfortable, cooling clothes. And then blankets when you get cold. Cause when she gets cold it’s, ah, can’t reach the remote.

Lupe:     I don’t be such an exaggerator.

Lupe:     You know, I did want to say one thing, when we had that earthquake. Um, the second one, I like, as soon as I get home I kick off my shoes. I just love walking around barefoot, and I was actually barefoot. And, uh, when stuff started flying off the shelves, I jumped up. And the first thing I did, I put my tennis shoes on. And I actually slept in my tennis shoes because, I mean, you don’t know what’s going to fall and there’s going to glass, you know, all over the place.

Lupe:     So, very important, also shoes. I actually always have an extra pair in my car because I like walking during lunch and sometimes I’m not wearing walking shoes. So, you know, I’m covered there. So, that’s important too. Stuff that people, I don’t think they maybe think about sometimes.

Brian:    And you can see that picture on our Facebook page.

Lupe:     Actually, I didn’t post it on Facebook. I posted on Instagram.

Brian:    And you can see that picture on her Instagram.

Lupe:     It’s @Sjogren_Strong, that’s our Instagram. But anyways,

Brian:    All good advice and we’d love to hear any and all advice from you. You can email us, you can hit us up on Facebook or Instagram and share with us what you may do for your preparedness with Sjogren’s.

Lupe:     Yeah, I hope we didn’t get off topic, but uh, I thought it was good to talk about.

Brian:    Definitely.

Lupe:     As you know, we’re participating in the Sjogren’s Walk in October this year. If you’d like to join us, we’d love to meet everybody. It’s going to be in L.A. And if you can’t join us, you could support us. There’s going to be a link in the show notes and you could join our Living Sjogren’s Strong group or you could participate on your own or just donate a little bit if you can.

Brian:    And if you’re not in a position to donate financially to the Sjogren’s Syndrome Foundation, please, please share our links along your social media, maybe somebody else can.

Brian:    We have a team goal. We have individual goals, but we’d really like to um, show up for the Sjogren’s syndrome Foundation. So again, that link will be in the show notes.

Brian:    And, and Lupe is not even aware of this.

Lupe:     What?

Brian:    Sjogren’s Strong, the podcast, has been nominated for a People’s Choice Award.

Lupe:     What!?

Brian:    So, our name, Sjogren’s Strong podcast is nominated. Now it’s up to you, our listeners to give us votes. We are in the “Health and Wellness” category and there will be a link in the show notes below and we will also do a social campaign probably Thursday, Friday sharing this link with everybody

Brian:    You do have to give your name and email address, you have to verify that that is your email address. And that’s just to keep the voting fair. And then once that is done, you can actually vote for a podcast in each category. When you get to Health and Wellness, we hope you vote for Sjogren’s Strong.

Brian:    And I’ll even go as far as this, if there’s a podcast out there that you find more value to and you decide to vote for them, we respect that, please send us an email. You don’t have to tell us what show, but give us some constructive criticism, so we can make this show better.

Lupe:     That’s actually very exciting. Why have you been holding out on me?

Brian:    Well, nominations just announced on July 1st. And last week I was pretty busy, so we’re getting it out this week. And again, we’re going to have social campaigns sharing this with everybody, but we would definitely appreciate you taking the time to verify your email and vote for the Sjogren’s Strong podcast.

Lupe:     Yay! That’s exciting.

Brian:    It is. It’s kind of a cool thing.

Lupe:     Who nominates you?

Brian:    Anybody can nominate anybody, so we’ve been nominated.

Lupe:     Alright.

Lupe:     That’s good. That means that we’re doing good work, right?

Brian:    Yes.

Lupe:     OK. Cool.

Brian:    Yeah. I mean it’s definitely not a negative. It’s a positive.

Lupe:     Good. I’m excited.

Brian:    So we’ve got lots of links in these show notes and um, please visit them and let us know what we can do better for you. And anything else.

Lupe:     I don’t know. You kind of stumped me, so I don’t have much to say.

Brian:    She’s speechless.

Lupe:     What? That’s exciting. Can you see my smile?

Brian:    I can see you’re smile.

Lupe:     Yes.

Brian:    All right.

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

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1 comment on “Chronic Illness and Preparedness

  1. Great podcast, as always. Congratulations on the People’s Choice nomination! Well deserved. I voted!

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