Lupe had a day of discovery with her sense of smell which drove us to do a little research. We share that here with you on this episode of Sjogren’s Strong.
Sense of Taste and Smell
Lupe & Brian: [00:00:00] Welcome to another episode of Sjogren’s strong.
[00:00:03] This is Brian,
[00:00:05] And this is Lupe.
[00:00:06] And this is your podcast discussing how to live an active and healthy lifestyle, despite a diagnosis of Sjogren’s.
[00:00:13] And today, I just wanted to say that because I feel like I haven’t said that in a long time. That’s how we, I, used to start the shows all the time.
[00:00:23] But today.
[00:00:26] We’re going to be talking about, the sense of smell and taste.
[00:00:31] But before we get into that, I want to give a heartfelt, shout out to Stephanie T. Stephanie, you know who you are. I want to say thank you very much for your kind words. Your comment went a long way.
[00:00:51] We often talk about what’s happening in our lives. First and foremost, we’ve got two days in a row with some nice long walks in.
[00:01:02] Yup. We went for a hike in Carbon Canyon this morning, back to the redwoods.
[00:01:08] And yesterday we did a little urban trek.
[00:01:12] It was about four miles and a half, yesterday.
[00:01:15] Four miles into a half or four and a half miles?
[00:01:17] What’s the difference?
[00:01:19] The way it said.
[00:01:20] Four miles and a half, four and a half. Was it different? It’s still four and a half.
[00:01:25] We did four miles in two quarters.
[00:01:27] I mean, as long as it’s the same distance, what does it matter how we say it?
[00:01:30] But we walked up to a local Staples because Lupe needed a new day planner. And then we walked to Starbucks and we had a little coffee. And then we walked home. Today was obviously much more our style because it was in the dirt and we were surrounded by trees. It was cool.
[00:01:53] And there was a lot of ducks and a lot of duck poop.
[00:01:57] Those were geese.
[00:01:59] They have feather, what’s the difference?
[00:02:03] There are two ducks and a half.
[00:02:05] And there was a lot of geese and a lot of geese poop that we stepped on.
[00:02:12] Well, that felt good.
[00:02:14] But anyway, we’ve been out and about and trying to increase the activity level. Having been home for three months with not much going on.
[00:02:24] It’s been really hot, lately, and dry. I mean, I don’t know how you feel Brian, but I feel really dry, lately.
[00:02:31] Yeah, no, it’s been dry. We’ve been running the humidifier’s pretty hardcore.
[00:02:34] But let’s get onto today’s topic. A couple of days ago, Lupe is all excited calling my name. And I go running into the restroom.
[00:02:47] What’s wrong?
[00:02:48] Can you smell it? And that’s typically something you don’t want to hear when you run into the restroom. However, she was doing her hair. And she sprayed her hairspray and she has not smelled her hairspray.
[00:03:01] I guess it’s been a long time because I haven’t smelled that smell in a long time. And it was, because I have curly hair, I usually moose it every day. Um, you know, if not, it gets all frizzy. So, it was my mousse and my hairspray, and I use Suave. And this smell was just, I don’t even know how to describe it. It just smelled really good. It was magical. I can’t describe it.
[00:03:32] And I said, yeah, that’s your hairspray.
[00:03:34] But and you smell it?
[00:03:35] And I said, I smell it every day.
[00:03:38] Guys, I haven’t smelled my mousse and my hairspray, that I’ve been using since junior high school, in many, many years. Because when I smelled it a couple of days ago, I just couldn’t believe it. It was such a beautiful smell.
[00:03:56] So to form, we jump online, and we start doing a little research and come to find out when your nose is really, really dry, your sense of smell is diminished. When it’s dry to the point to where it’s scabbing over, it really decreases the ability to smell.
[00:04:17] We stopped and thought about what’s changed, A. We’ve been running humidifiers, like crazy, because it’s been getting hot.
[00:04:24] And I’ve been working from home. And I have a little one at my desk running all day.
[00:04:28] And she’s been working from home, out from under, the air conditioner.
[00:04:32] Yeah. I don’t know what it is, truly. I don’t know what it is. I didn’t realize my sense of smell was so bad. I knew that my sense of taste had diminished, but I don’t know. So, is it Sjogren’s? Of course, it is! Because, I mean, I have heard that from other sjogie’s. Um, I just didn’t realize it had affected me so much. Because it’s not something that happens right away. It happens gradually. So, you don’t really realize it. Just like, you know when you need glasses, it just happens gradually.
[00:05:03] While we were researching, most of these studies, when it came to the sense of smell, also included the sense of taste. And we discovered something kind of interesting, that a decreased level of saliva in the mouth will decrease your sense of taste, with the exception of sweets, because sweets aren’t dependent on saliva to still taste sweet.
[00:05:29] Why is that?
[00:05:30] I guess it’s just the way the mouth’s made.
[00:05:32] I mean, because it does make sense, right? Because what do I crave? I talk about it all the time.
[00:05:37] Ice cream.
[00:05:37] What’s my crack? Ice cream, chocolate frosted donuts. Um, I love my Starbucks, that I haven’t really had because working from home, I don’t need to go anywhere, you know, but uh, yeah. Reese’s peanut butter cups, anything sweet. So, yeah, you’re right.
[00:05:54] And this study was funded by a research and development grant from Northwest Wales, NHS trust. Uh, so it is coming out of Wales. And the date on it is, uh, December of 2009. But they recommend at the end of this study, that these things be discussed with your doctor, because it’s a quality of life issue.
[00:06:19] And if your sense of taste and smell continues to diminish, then your quality of life is diminishing. However, there’s no known treatments for sense of smell or sense of taste.
[00:06:33] OK, but you gotta back it up a little bit. You can’t leave it like that. What do you mean your quality of life is diminishing? Why? Cause you can’t smell or taste?
[00:06:40] I mean, you miss it, but does it really affect your life so much that the quality goes down.
[00:06:47] If you couldn’t smell the fresh flowers that you can see. If you couldn’t smell that salt air coming in over the ocean. If you couldn’t smell the pines, while you walk through them.
[00:06:58] Speaking of that, did you smell the pine today? I didn’t smell the pines.
[00:07:01] We were in the redwoods.
[00:07:02] Oh, that’s why I didn’t smell the pines, duh.
[00:07:05] No, there were, when we got into the redwoods, there were.
[00:07:09] I didn’t smell it. Um, I can smell freshly cut grass. I can smell that.
[00:07:15] Um, but, like I said, I didn’t know that my sense of smell had diminished so much. So, that’s why I got so excited. Oh my God, . I can spell my hairspray. It smells so sweet. So good.
[00:07:26] So she’s been walking around with a can of hairspray. Oh, It’s not so good.
[00:07:31] That’s my new air freshener.
[00:07:32] Oh it smells so good. Everything’s sticky.
[00:07:36] Oh my goodness. That’s so funny.
[00:07:39] We kind of wanted to turn this to you. And see what you are experiencing with your Sjogren’s. Have you noticed a decreased sense of smell and or taste? Do things not taste like you remember them tasting from years back?
[00:07:55] For me, nothing tastes the way it used to. I don’t want to enjoy certain things, so much. Um, I’m not a foodie. I’ve never really been a foodie.
[00:08:06] Maybe that’s why?
[00:08:09] That you don’t have?
[00:08:11] Cause I’m not a foodie?
[00:08:13] No. Because you can’t taste things, to know that you liked them.
[00:08:18] I mean, I’m not going to say everything tastes the same, but I definitely don’t enjoy things that I used to enjoy, so much, before. And I thought, well, I don’t know, maybe I’m getting older. Maybe, I don’t know. But I mean, definitely Sjogren’s. And maybe that’s why I’m not such a foodie, like you said.
[00:08:38] It’s like, what do you want to eat? Whatever! Everything tastes like cardboard. So, who cares what I eat? You know?
[00:08:44] So, why won’t you try things you think you don’t like?
[00:08:48] Well, because I can’t really taste it, I guess. No, but that’s not it, you know what? I’ve never been a foodie, you know that.
[00:08:53] Uh, huh!
[00:08:54] Oh, so when, first, when Brian and I first started dating and he loves cooking, he used to cook these gourmet dishes and I’m like, okay, I’ll try it. But I’m like, just feed me something simple. I mean, I’m happy with a taco beans and rice. I mean, cause yeah, I’m kind of lost for words. Everything tastes the same, really. It’s not you, Brian. It’s not your cooking, obviously, it’s me.
[00:09:19] See, and that pains me. Because I miss, I miss cooking and slow smoking.
[00:09:25] But you can cook it for you.
[00:09:27] It’s so much more work for just me. And then I’m sitting there enjoying this slow, smoked chicken and you’re eating a bowl of cereal.
[00:09:35] Cardboard. No, no, no, no, no. Um, so the fajita, Whatchamacallit’s from Trader Joe’s, those are really good. The first time that you did that, it was so yummy. The second time, it’s still yummy, but it doesn’t taste the same. Because maybe my taste buds changed. Right? Because of this, what we’re talking about right now.
[00:09:55] Uh, cause sometimes, foods that I’ve had in the past. Sometimes they taste better than other times. It’s not the way that it’s made. It’s just my taste buds at the time.
[00:10:05] See, that’s why you get mad at me all the time. What’d you do different? This doesn’t taste the same way.
[00:10:10] It’s like, Oh yeah, yeah!
[00:10:12] I’m like, it’s Coca Cola from a can.
[00:10:15] I tell Brian, oh my God, this is so good. Do not change the recipe. He makes it again, , you know, a couple of days later, what did you do? I told you do not change the recipe. And maybe he didn’t. So, Brian, my bad.
[00:10:27] I don’t cook with recipes; you know that I cook to taste. I conceptualize how I want it to taste and I start cooking.
[00:10:36] Well, I know, but what I mean is, if I tell you, oh my God, this is so good. And then the next time you cook it, you add something else or what you think is going to make it better. No. Just leave it.
[00:10:47] No, because it probably tastes the same.
[00:10:51] Well, that’s what I’m saying now. Now, I realize that now. Maybe it wasn’t even your cooking, maybe it’s you’re not your cooking. Maybe it’s obviously just me.
[00:10:59] So, in front of everybody, I want to say, my bad, I apologize. Your cooking is awesome. I just can’t taste it.
[00:11:10] Oh my goodness. We wanted to share this with you. We thought it was kind of interesting. And after reading this, we’ve kind of, you know, have a baseline of no AC, humidifier running pretty much 24 hours a day, in the house where you are.
[00:11:30] It’s going to be interesting to see what changes when you go back to work, next week.
[00:11:38] You know, cause you’re slated to go back to work here.
[00:11:41] On the 15th.
[00:11:42] A week from today.
[00:11:44] We’re not talking about yes, right now, but I’m just going to talk about this really quick. So, at night where I sleep, I’m running the humidifier. It’s a big one. It lasts like 10 hours, along time but it is hot. And so, we’re running the fan. And so, I’m thinking, because in the middle of the night, not every night, but last night when I woke up, in the middle of the night, my eyes, they just hurt so much. They were so much pain. And I can’t describe the pain to you, Brian, because you just won’t know.
[00:12:21] Because you don’t have dry eyes like me, but it literally pained me to open my eyes. And in a lot of times I think, am I really tired. That’s why I want to sleep so much. Or is it, my eyes are so dry that they hurt. And my body’s just telling me close your eyes. You’ll feel better. My point I.
[00:12:43] And then her body’s telling her, well, your eyes are closed, go to sleep.
[00:12:46] My point is because I’m running the fan, right. Even though the humidifier’s on, the humidifier is helping me. But is the fan canceling it away because it’s blowing away the humidity, from me.
[00:12:58] So maybe we put the humidifier in front of the fan. So, it’s blowing moist air toward you.
[00:13:02] Ooh, you’re so smart. I just thought, you know, the humidifier right next to me will help more, but not to mention that.
[00:13:08] I mean, we might lose some of the moisture, but if we run it on high, cause right now we run it on low.
[00:13:15] And it’s behind you. So, you’re right. When the fan, but the fan oscillates.
[00:13:19] And this is probably really boring to listen to.
[00:13:22] No, I don’t think so. I think it’s helping many.
[00:13:24] So, you know what? We will change the set up tonight and see what’s different. Cause I remember as a kid, growing up, we didn’t have air conditioning and my mom would put a bucket of ice water down and soaked towels in them and then drape them over the fan and it would blow cooler air.
[00:13:44] So if the humidifiers in front of the fan, as it oscillates, you’re going to get to a point to where it’s blowing moisture air to you.
[00:13:54] I tell you tell you what I’m going to do. I am going to take out the humidifier that I hid in the garage. so, you wouldn’t see it .And want to take that out, put it in front of the fan and leave the one right next to me.
[00:14:09] I mean, because on really bad days, we’ll start a pot of water are really dry days, we’ll take like this big lobster pot, fill it with water and just run it on the stove, to get that moisture into the air. And that helps you ,hot shower
[00:14:28] Yesterday when we took that walk to Starbucks and to, um, Staples my eyes, during the walk, they felt really dry. They hurt really bad. And they started watering, which is really weird. If they’re dry, why are they watering? I don’t know.
[00:14:44] But anyways, uh, I thought to myself, oh my goodness, I should have brought my Zienna glasses. And today for our hike I did take them and if you guys have the same issues that I have, you guys have to check out Zienna, because it’s instant relief.
[00:15:06] The lenses inside because I didn’t spray him with the anti-fog, hey got a little bit foggy, which means, it just traps the moisture.
[00:15:16] So I wore them for a couple of hours, and I mean, today, I haven’t had that issue because I’ve been wearing them.
[00:15:24] So, guys, if you guys haven’t checked out the Zienna, please check out Zienna, they are awesome product.
[00:15:31] And what I have been using religiously also is the Lubricity mouth spray. And I took it with me today. MY eyes feel dry not my mouth, the product really works for me. Every four hours I do a couple of sprays in my mouth and I’m good.
[00:15:50] And I actually stole a bottle from her and when I’m doing my work and my mouth gets dry, I’ve been using it. And it works for me, as well.
[00:15:58] I mean, if it works for you.
[00:15:59] I’m pretty pleased.
[00:16:00] So, you produced more saliva, as well?
[00:16:02] Yeah. Because I mean, I talk a lot throughout the course of business and. it helps produce saliva, but it’s just makes them all feel really good. And I’m not like, oh my gosh, I need a sip of water, as often, you know.
[00:16:15] You shouldn’t run your mouth so much. You kind of do that a lot sometimes.
[00:16:18] Work is work.
[00:16:21] You didn’t get it.
[00:16:22] And I’m on the Lubricity note, if you click the link in the show notes below, or go to Lubricity and use the discount code SS for Sjogren Strong, SS30, you will get 30% off your order. So that is SS 30 at Lubricity.
[00:16:40] And hey, before we forget, let’s talk about the foundation’s patient conference, it’s coming up.
[00:16:46] Yes. The National Patient Conference is going to be in June 26th and 27th. Registration is open now. If you go to sjogrens.org, it is right there on the home page. It is a virtual patient conference. So, you will be able to log in online from the comfort of your own home and hear all the wonderful speakers that they have lined up.
[00:17:13] Again, that is June 26th and 27th. Each day will begin at 1:00 PM and go to 5:15 Eastern time. So that would be 10 Pacific or 1:00 PM Eastern.
[00:17:28] I’m so glad they’re still having it, but I’m so bummed because I really wanted to experience it in person, in living color, meet everybody.
[00:17:39] Yeah. Next year.
[00:17:41] You know, cause, um, a lot of people had reached out to us and we were planning to get together, go out for breakfast before the conference and we’re going to walk together. So, I’m kind of bummed, but hey, there’s always next year, right?
[00:17:55] Yeah. Let me, let me run through some of the speakers. Dr. Scott Lieberman is going to be discussing pediatric Sjogren’s, Conquering Sjogren’s, What’s Next by Steve Taylor, the president, and CEO of the Foundation. Oral manifestations, there’ll be a product showcase and that pretty much concludes day one.
[00:18:17] Day two dry eyes, what’s new, integrative medicine, a role for treatment in Sjogren’s, Sjogren’s research update, how coaching can help, autonomic nervous system involvement and pots by dr. Brent Goodman. And then conference recap and close. So, it looks like it’s going to be pretty cool. We’re looking forward to it.
[00:18:43] Most definitely. So please let us know what you’ve experienced with your sense of smell and taste. We would really love to hear.
[00:18:52] And one of our upcoming episodes is going to be pregnancy, labor, and delivery, if you have Sjogren’s. Shelby will be returning to the show, she did an episode way back in the beginning. But she is now a labor and delivery nurse and has just moved back to California.
[00:19:14] And we’re excited for that because a lot of people have reached out to us and they want us to talk about it. So, we’ve been doing some research. Well, Shelby, she’s an expert here, so., we’re excited for that show.
[00:19:26] So that will be coming up probably in a couple of weeks. She’s still unpacking and settling in. So that’s a, that is in the pipeline.
[00:19:35] I always end the show by saying sip constantly and stay hydrated. But today I want to quote my friend, Stephanie T and I want to say, stay safe, healthy, and hydrated.
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