Lupe & Brian: Welcome to another episode of Sjogren’s Strong.
Brian: This is Brian.
Lupe: And this Lupe.
Brian: And this is your weekly podcast discussing how to live an active and healthy lifestyle despite a diagnosis of Sjogren’s Syndrome.
Lupe: Summer is here. It’s been really hot, lately, I’m sure everywhere. And I wanted to talk about what I’ve been experiencing lately.
Brian: And it hasn’t been good.
Lupe: Man, you always have something to say.
Brian: I’m just trying to be a good co-host.
Lupe: So, let’s see, what have I been experiencing lately?
Lupe: I’m going to say rapid weight gain. And I’m going to say about maybe the last week and a half, rapid weight loss. And I can tell in my clothes.
Brian: So let’s take this back just a little bit. Um, we’ve talked about, before, how we rule things in, rule things out, how we’ll play with their diet in tweak things.
Brian: So, we did an episode where we’re like, we’re going to lose weight this summer and we’re going to report back. And then Lupe’s body just kind of went, yeah, whatever. I’m going to do what I want to do. And it all came about the time with an increased stress level. The heat of the southern California summer and just weirdness has been going on with her.
Lupe: I’ve been experiencing a lot of swelling and I noticed, actually I notice everywhere, but it’s more noticeable in my fingers.
Brian: We call them sausage fingers.
Lupe: Pronounce it right. We call it, sausage.
Lupe: That comes from an episode of um, Ink Masters.
Brian: Ink Masters. That’s right.
Lupe: Our favorite artist, his name was Sausage. So we just started calling him Sausage.
Lupe: Anyways, nor here nor there. But uh, that’s what we started calling my fingers, is sausage fingers.
Brian: When all of this started happening, we took a look at diet. And her diet was pretty solid. Um, she was doing either roasted veggies and/or salads. She was sneaking some sugar in. She’s like, no, I’m not. But I’d get in her car and there are like Reese’s Peanut Butter Cup wrappers.
Lupe: True. True. Guilty as charged.
Brian: So, with all of this going on, it’s like, okay, let’s cut the sugars. And with the heat coming on, she was consuming a lot more Gatorade than normal. And Gatorade has a lot of sugar in it, so let’s reduce that, which we started just replacing with water for the most part.
Brian: However, right now we’ve pretty much, I think she’s doing one Gatorade a day right now. We’ve got lemon water in the fridge. We bought cucumbers for cucumber water when the lemon water’s gone, but we want to reduce that sugar. She kind of went off vegetables for a little while and started doing fruit.
Lupe: You know, how for the last couple of weeks we’ve talked about anxiety and I was going through a funk. Part of that was I think I was a little bit lazy to prep my veggies and my salads. And I don’t know why I was so lazy because Brian does all the cooking. I just have to put it in containers, right. But even that was too much for me.
Lupe: But what I did find easy was cutting fruit, packing a banana, cutting up a peach. I love peaches. Cutting up an apple, a pear and taking that for lunch and snacking on it, you know. Because since I was going through a funk, I wasn’t really hungry. But I knew I had to eat and I know it’s time to eat because my body tells me. I started getting really bad headaches and I know I need calories or I need water.
Lupe: And I knew it was calories. Because I was lazy. I was in packing my lunch. And I noticed, last week I posted on Instagram a picture of my finger because that’s when I noticed it,.
New Speaker: That it was swollen, but really it wasn’t that it was swelling, it was that the inflammation was receding. So, I started noticing how my finger was getting skinnier from the fingernail bed. My fingers were swollen to the tip, right?
New Speaker: And then it got down to my first knuckle and now it’s past my knuckle. And I’ve just been wondering what’s causing the inflammation to go down. So I posted on Instagram about my finger and I got a lot of responses.
Lupe: My friend Kristi she sent me a private message and she said that it, something about nightshades, she said. I’ve heard the term but never really paid attention to it. But once she mentioned it, I talked to Brian about it and us kind of dove deep into it. And there are all these veggies that cause inflammation that I was consuming that I didn’t know. I mean I thought I was eating healthy, right? Cause when you eat leafy greens and veggies, you think you’re eating healthy. But these nightshades were causing me inflammation.
Brian: And then as we dive deeper into nightshades and we know how the Internet is, we found articles where they’re not believed to cause or there’s no scientific data saying that they do cause inflammation.
Brian: But what we did is we went ahead, and we removed them from her diet to see what’s going to happen. And I want to say this, she’s particular about what she eats. So for example, I don’t like to eat the same thing every day for the week. But she will make up her mind on the weekend. I’m going to eat roasted veggies this week. So, I roast a bunch of veggies and she eats that every single day for lunch. And then she gets sick of them. And I’m going to have salads this week and she’ll go for a few weeks with eating salads.
Brian: And I try to encourage her to mix it up. Have you roasted veggies one day, have your salads the next, just mix it up so you’re not consuming the same thing every day for, you know, 10-15 days straight during the workweek. And I think that that may have something to do with it. Cause then she’ll switch up and she’ll go to, you know, fresh salads and things change a little bit. But then her body gets burnt on that. And you know, the old adage, anything in moderation is okay. In my opinion. She doesn’t moderate her intake. It’s all of one thing until she gets sick of it and then it’s all of something else until she gets sick of it.
Lupe: So when I was eating the roasted veggies, I always call them little, um, lettuce heads.
Brian: Brussels sprouts.
Lupe: I would say the little roundies you know, cause I forget names.
Brian: And cauliflowers the white trees.
Lupe: And then the green trees were for broccoli. But anyway, I call them little roundies because I always forget the name. Ah, it’s funny ’cause it’s true. Anyways, the little roundies, the Brussel sprouts, I was consuming that forever. I’m going to say months because they’re really good and he makes him really good and he roasts them or steams them and he changes up the flavors. But I don’t know, those are considered nightshades. They weren’t on the list. so I don’t know what it is about sprouts. Also the roasted veggies with the process sprout, it was bell peppers, corn.
Brian: Broccoli, cauliflower, string beans, carrots.
Lupe: And so I stopped eating that for about two weeks because I was being lazy and the inflammation started receding. So I mean, I don’t know if it’s that, I don’t know what it could be.
Lupe: Now me knowing my wife, she says, roasted veggie, bad. Peanut buttercup. Good.
Lupe: Oh hey, you know what? Because I have to eat something right and chocolate and cocoa come from a plant. So it must be good for you. Right?
Lupe: And they say peanuts are good for you too. So Reese’s Peanut Butter cups must be great.
Brian: Right? But peanuts in the amount you consume them can be bad for you and cause inflammation because of all that gluten.
Lupe: Speaking of peanuts, as a snack, I like a handful of peanuts or maybe 10 handfuls of peanuts, but because I’m starting to produce less saliva, they would get caught in my teeth between my gum. It was just really uncomfortable. So I’ve kind of weaned myself from certain things like almonds and peanuts. They’re just yucky in my mouth. So maybe it’s that, maybe it was a peanut, I don’t know what it is.
Lupe: But uh, to the point where the outfit that I’m wearing today, the pants, uh, they were a little bit snug on me and I’m totally sagging them. So, I don’t know, I’ve lost about seven pounds since last week.
Brian: The cool thing is we’ve reduced or removed certain things from her diet and the tides are turning, the inflammation’s receding, she’s dropping some weight and she’s pretty happy and motivated with what’s going on now.
Brian: Now, how long will it last? We don’t know. How strict to her new diet is she going to stick? Is she going to switch it up? Regardless of those decisions that she’ll make on a minute by minute basis, her rheumatology appointment is coming up and she will obviously discuss this with her doc and I’m sure we’ll touch base back on this in a future episode.
Lupe: I mean, I don’t know what my diet basis is going to be, because I don’t even know what my diet is right now. I just know I’m eating fruit and that has a lot of sugars, so I have to chill on that.
Brian: Yeah, but all the fruits and the Gatorade and the peanut butter cups, bad.
Lupe: Oh, which reminds me last week, I don’t know, maybe Thursday, Friday, maybe even Wednesday I was going to the peeps a lot, number one. Hey, I’m just being me. Right? Brian’s laughing at me. But anyway, I was going to number one a lot and I’m like, well I’m not even consuming g that much water, why am I going to pee so much? Is it the fruit? I don’t know. Was I retaining water? I don’t know.
Brian: Which in my mind was edema or water retention, and your body’s starting to flush all that out. You’re dropping the weight, the swelling’s going down.
Lupe: Well, it’s still a mystery to me, I don’t know what’s causing it.
Brian: Maybe a little less stress in your life?
Brian: And a change in your diet. You’ve removed a lot of glutens.
Lupe: I haven’t had Reese’s Peanut Butter Cups or a Starbucks, that I love, because I know that has a lot of sugar.
Brian: Yeah. And you’re consuming less sugar. So, you know it’s one of these things to where one answer isn’t the only answer. And one answer for Lupe might not be the answer for you or the person next to you.
Lupe: But keeping track of what you’re consuming in what quantities and frequencies put you in a position where you can say, wow, this has changed. Let me change this in my diet and see how it affects my body, which is what we’ve done. And it seems to be helping.
Lupe: I’m excited because on that post on Instagram, as I said, I got a lot of feedback and I’m very appreciative of this community because, you know, I wanted to do the podcast to help everybody to shine a light on Sjogren’s. Right? But the truth is I’m learning so much from everybody.
Lupe: Like for example, nightshade veggies and a lot of people have said tart cherry juice helps with inflammation, as well. Not only inflammation but gout and joint pain.
New Speaker: And it’s yummy.
Lupe: It’s like not really yummy guys.
Brian: So, we went and found tart cherry juice.
Lupe: Oh and Kristi, this is for you. Actually, Brian said let’s buy that Kombucha and we did buy it and when he opened it, it just feels all over the place. And it was the yuckiest thing.
Brian: No, I kind of dug it after I got used to it.
Lupe: No, you didn’t.
Brian: And I did. I drank pretty much the whole thing cause you took one sip and we’re done.
Lupe: I was like, nah ah!
Brian: I think it’s Kombucha? Kombucha?
Lupe: I don’t know Kombucha. I’m going to say Kom, whatever.
Lupe: So we found a Tart Cherry, Kombucha, ee, I, and we also found a concentrate that we passed on, but we found a tart cherry juice. And then for some other reason were at Trader Joe’s, she buys another thing of tart cherry juice not having tasted the first one.
Lupe: Because it was a different brand, it might taste different. Or what if I really liked it and I wanted more.
Lupe: So, anyway, we did some research, um, we’re going to give it a shot. We have about a half-gallon of tart cherry juice, but then we went out and bought a capsule of Tart Cherry. And you put that in your shake today. How was that?
Lupe: Yes. Uh, two people commented that there are also supplements. So, we went to The Vitamin Shop and we bought these tart cherry capsules and I put him in my morning shake with my concoction that I make up. And it actually gave it a good flavor. It didn’t give you that.
Lupe: Yeah, that was pretty bad.
Brian: And she doesn’t put the capsule in it. She opens the capsule dumps the contents of the capsule in her shake.
Lupe: Well, because I have a hard time swallowing pills so that’s why I’d rather buy capsules and just put it in my concoction that, I call a morning shake.
Brian: And one other thing we started doing, too, is we bought a coffee press and I fill it about halfway up with hot water and we steep Thyme, Cardamom, Turmeric, Ginger.
Lupe: The lemon, your zest, the lemon.
Brian: Lemon zest.
New Speaker: Yeah.
Brian: Um, in the water and then we press it out. We’ve been using that as a morning tea rather than the other teas she normally consumes. And it’s strange and I don’t measure, I kind of eyeball it. So every morning it’s a little heavier in one thing or another and it doesn’t look all that great. It’s kind of an orange apple cider looking.
Lupe: It’s really good.
Brian: It does taste pretty good. And these are all herbs and spices with anti-inflammatory properties. So we’ve picked that up the last few days. And I’m sure that that’s impacting you a little bit.
Lupe: Yeah, it’s a little bit of everything. I don’t know. Cause I put turmeric in my morning shake, as well, and all those spices.
Brian: And that’s one thing we’ve done. We’ve made a lot of changes, drastically, in a short period of time just because of what she was experiencing. And obviously not recommended because we can’t say this for sure is helping or this for sure is not, because we have changed so many things so rapidly.
Brian: And I stopped drinking Gatorade over the weekend and today I know that I didn’t drink enough water. So, I know I haven’t been consuming enough water. But guys, I found a cavity and I got devastated. It totally devastated me. And I said nope, no more sugar. I’ve been brushing my teeth 10 times a day.
Lupe: She’s not exaggerating. She’s like, will you pause? I need to go brush. And I’m like, you brushed like 20 minutes ago. Yeah, but I had a piece of apple.
Lupe: Yeah, I know. I was freaking out last night cause I had an apple. I was, ah, wanted to snack on something and I had half an apple and I didn’t get up to brush my teeth and I fell asleep. And when I woke up I’m like, Oh my God, I’m not sugar.
Brian: So this weekend, traveled toothbrush, an extra tube of toothpaste for the office.
Lupe: I know you’ve called me a freak. A little bit. I am, but that’s okay.
Brian: Anyway. We kind of just wanted to touch base. What are you experiencing this summer with the weather change? If you’re in a climate that’s summer right now because we know some of you aren’t. And/or what have you experienced during the summer? Is anybody else going through this water retention or edema or swelling with the weather change and what are you doing or what have you done to help combat it?
Brian: Your medical appointment is?
Lupe: On the 14th.
Brian: So, it’s next week. So in two weeks, we’ll probably be recapping a little bit with what doc might’ve said and, or just an update. You know, it might not even be that high on the radar with the changes we’ve made. If we keep progressing in the manner in which we are.
Lupe: Yeah. But because I cut everything out, I don’t want to become anemic, so I actually bought some iron pills over the weekend, as well. Tiny ones, so I’ll be able to swallow them.
Brian: So, again, a lot of changes over a short period of time. We’ll keep you abreast of our situation and please let us know what you are experiencing and or what remedies or modalities that you’ve put in place that are helping.
Brian: You can do that by commenting on this post on sjogrenstrong.com and/or hit us in the Facebook group, Living Sjogren’s Strong on Facebook. If you are not a member, please just hit the request to join, answer three simple questions and we let people into the group three or four times a week. And if you don’t answer the questions, you’re going to kind of be stuck in a holding pattern. If you recommend somebody to join the group, let them know to answer the questions after five, six days. We just remove people who have not answered the questions.
Lupe: Well because we want to keep it.
Brian: We want to keep a nice tight community for those of us supporting somebody with Sjogren’s or living with Sjogren’s. And if people become spammy or too negative, you know, we’re going to send them a private message and it’s just not the place for it. We’re here to lift each other up and help each other out.
Lupe: But we’ve haven’t had that issue. So we’re a great group. I love it.
Brian: Yeah, it’s been a good group.
Brian: Good group so far. Um, couple other quick things. We are still raising funds for the Sjogren’s Syndrome Foundation. You can do so by supporting Living Sjogren’s Strong team that will be walking in the LA area, walk for Sjogren’s in October.
Brian: There will be a link in the show notes below. If you’re listening to this on a mobile device, hit info, scroll down, the links are there. If you’re finding us on social media, just hit our website tab and there’s a cool banner across the top.
Brian: If you live locally, we would love for you to join the walk and walk with us by joining Team Living Sjogren’s Strong, you’re committing to raising just $250 for the foundation and you get a cool web page that you can direct people to so they can donate online in a safe, secure manner and receive their receipt for tax purposes.
Lupe: Man, you talk really fast. I want to sneak something in.
Brian: Sneak it in.
Lupe: So I mentioned, you know, right the episode where I noticed that I was saying, you know, so much, I don’t know if you guys counted, it was 30 times. I said it 30 times in about half an hour. I was like, oh my God, what the heck? Um, and so then the following weekend it was about 10 times. So, um, I actually donated $15.
Lupe: Because it was that episode. You said you were going to count and donate a buck per night the episode before.
Brian: Correct. But even though the, “you know”, I’m doing the.
Lupe: Air quotes. Yeah. Um, even the, you know that I said don’t count. I still included those and then, then I added a little bit more to round it out. So anyway, it was fun. And I’m going to do that until the walk. So how many times I say it, I’m going to donate a dollar every time I say a per episode until we walk.
Brian: And the name of the individual donating for the, you know, the campaign is called.
Lupe: You know.
Brian: I just wanted her to say it. There’s another $1
Lupe: Oh dang, you got me.
Brian: All right, you got anything else?
Lupe: I just want to say, thank you to everybody. All the listeners, all the followers. Again, Brian and I wanted to do this from the heart because we wanted to help newly-diagnosed, people that have been diagnosed. You know, we’re doing what we can to shine a light on Sjogren’s.
Lupe: But I am learning so much from you guys and I wanted you to know that I really appreciate it. A lot of things, I didn’t know. A lot of things I didn’t think of. So I love you all. Thank you so much. You guys are amazing.
Brian: That’s what building a community is all about. We’re stronger together. So keep up the conversations on Facebook, Instagram, and Twitter. And again, you can comment on each and every episode that you choose to on sjogrenstrong.com
Lupe: That’s all I got! Until next time, sip constantly and stay hydrated,
Help “Living Sjogren’s Strong”
Support the “Living Sjogrens Strong” Team for the 2019 LA Area Walk for Sjogren’s. You can join our Team and/or donate to the Sjogren’s Syndrome Foundation