Sjogren's Strong

Introduction

Consider the Source

Lupe & Brian discuss researching on the internet, suggestions they have tried and some results.

Consider the Source

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.

Brian:    What’s up cry baby?

Lupe:     Wait, what?

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Brian:    Beebee beebee beebee beebee, breaking news, Lupe did not cry this week.

Lupe:     Yay!

Brian:    So it’s been a good week. Why don’t you fill us in?

Lupe:     Um, well, okay, yes and no. I’ve had a great week. Since last week, that I said that I had lost eight pounds of inflammation and was hoping ten, I did actually reach 10 pounds. And what am I doing? I don’t know a little bit of everything, but whatever I’m doing, it’s working. So I am going to continue to do it.

Lupe:     I’m eating fruits till dinner time, that seems to be working. I’m really religious with my meds. So, there’s that and I’m still using the Tart Cherry capsules that I’m adding to my morning shake. So I’m doing that. I’m still taking my morning shake with everything that I put in it and I call it a shake. So I’m still doing that.

Lupe:     So, you know, I’m on the fourth floor, I walk upstairs in the morning and every time I need to use the restroom, I go to the first floor, for a couple of reasons. I get my steps in, my exercise. But the ladies room on the fourth floor, it’s always packed, downstairs, nobody. So, I can do my business in peace.

Lupe:     So yeah, I’m doing that. But what I wanted to say was, because I’ve been doing that for four months, I think, my legs were getting inflamed, but I thought, man, my baby’s not getting buff, you know? But no, really it was inflammation. But since I lost 10 pounds, it’s just easier for me.

Brian:    So I’m guessing you liked your new rheumatologists since you’re not bringing that up at all?

Lupe:     Ugh, you know what, my rheumatologists, so he’s very young. But young is not bad because they learn new things in school. And he took labs, he took x-rays, cause my lower back has been aching a little bit. And I haven’t been able to sleep in bed. And I think it was because of the inflammation, because now that that’s gone down, I’m not in as much pain anymore. But he sent me an email and he said that my x-rays were okay.

Brian:    So your first impressions of this young new doc were?

Lupe:     I like him.

Brian:    Even though he’s young, did he answer your question about having treated Sjogren’s patients?

Lupe:     I asked him, does he have a lot of patients with Sjogren’s, that he treats and he said, actually I do. And he asked me how was I diagnosed with Sjogren’s and I thought he was going to say, oh, we’re going to have to do a lip biopsy. And I was going to say, hold up, wait a minute, because I’ve heard really bad things about that.

Brian:    Not today.

Lupe:     Not today. Nope. But because she has a new doctor at a new clinic, of course he wanted to get his own labs and come to his own conclusion about my diagnosis.

Brian:    So, and when the blood work came back.

Lupe:     In doing so he um, he diagnosed me with the secondary autoimmune, Hashimoto’s.

Brian:    However, you’ve already had thyroid issues and been on meds for a while and no new meds or course of action was prescribed.

Lupe:     Because I’m already on Synthroid, there’s really not much else you could do. But I just wonder how long I’ve had it. Because just because you’re taking thyroid medicine doesn’t mean you have Hashimoto’s. Does it?

Brian:    To my knowledge, no.

Lupe:     So there’s that. I was a little bummed when I read it, when I read the email, but I mean it is what it is. Just move on.

Brian:    All of this transpired on Saturday, the emails and the results. But Sunday we decided to get out of the house, this beautiful weather. We had a nice overcast sky, was supposed to be pretty good warm. But uh, we loaded the bikes up and headed to Hollywood.

Lupe:     And Brian, I mean, he knows that I love those events, but uh, I was feeling a little bit lazy to get out of bed and he just did not take no for an answer. And I appreciate that very much because once I was out, cause I love being on my bike. I just had so much fun.

Brian:    I didn’t even ask you a question. I went in and woke you up and said we’re leaving in an hour and 15 minutes going for a bike ride, get ready.

Lupe:     And uh, that’s kind of, sometimes you just kind of need that, that little push. Because again, I was lazy to get out of bed, but once I was up. I got excited and it was so much fun.

Brian:    About 20 minutes after she got up, I said, breakfast is ready, come out here and eat. And then we loaded up and we headed to Hollywood for CicLAvia, which is an event held in the Los Angeles area.

Brian:    And the Metro system out here is one of the primary sponsors. However, there are quite a few sponsors. And what they do is they shut down streets and it usually starts and stops at metro points. And there’s usually a couple on the way. The Hollywood event was seven and a half-ish miles?

Lupe:     Yes.

Brian:    And they actually had part of the Hollywood Walk of Fame shutdown, but basically they shut down all the streets. There are streets with cross traffic. Um, but there’s crossing guards, making sure it’s safe for all the cyclists, but the cyclists and walkers and there were people there on scooters and whatnot. We had the streets to ourselves and it was a pretty cool event. So end to end was right about 14 ish, 15 miles.

Lupe:     Yes, yes. And we made it on the Channel 5 News. KTLA baby.

Brian:    We were keeping our eye out for the news channels and you know, we’re those hecklers behind them, waving whoo whoo, we were there.

Lupe:     Actually that’s not true but uh, we were on TV anyways, which was pretty cool.

Brian:    And if you want to check out some of the pictures from CicLAvia, hit us up on Instagram. We are at Sjogren’s Strong. The next CicLAvia event is going to be October 6th and we plan on being there, as well. This one is the Heart of La. It starts at either Mariachi Circle, Chinatown or MacArthur Park. There’s three ends at this ride. You don’t really have a start line and to finish line you can kind of come and go as you please. But we do plan on being at that one. It’s completely free. All you have to do is get there with your bike. We recommend helmets, not he law, if you’re over 18. However, helmets are good.

Lupe:     But you don’t necessarily have to have a bike. There was people on scooters and runners and walkers and people on skates. As long as you’re out there.

Brian:    Yeah, and it’s pretty cool to be out there. Again, streets are closed. We plan on starting at Mariachi Circle, crossing the LA River on the fourth street bridge, heading to MacArthur Park and then up to Chinatown, back down and to our starting point at Mariachi circle.

Brian:    So again, if you’re in the area, come and join us. It’s not a race, it’s not timed. We go at our own pace. Every once in a while you have to get off your bike and walk through the vendor area where all the sponsors have booths set up. We were able to try the new NesCafe protein shake and they’ve got tons of activities and things like that along the way. And you can stop and rest as needed.

Lupe:     That didn’t sit well on my belly.

Brian:    No, she wasn’t a fan. You weren’t a fan of the nest cafe protein,.

Lupe:     Well, I don’t like coffee and I guess it had dairy in it because it upset my stomach.

Brian:    Onto the meat of today’s show. Um, the meat here is going to be a little brief, but again with all the research we’ve been doing trying to come up with answers and solutions to Lupe’s inflammation, we wanted to kind of reinforce the fact that you really, truly need to consider the source of information when you’re researching online.

Brian:    We want to preface this with a couple of things, at the beginning of our episodes we have a disclaimer. We are not medical professionals, we are not dietitians or nutritionists and if we share something it’s because we’ve attempted it. We’re satisfied with the results with Lupe.

Lupe:     Yes.

Brian:    Thanks, thanks for chiming in. Research and just because it’s not a reputable source or a source you may have heard of before, it still might be good information. And if it’s noninvasive, diet based, give it a try.

Brian:    With Lupe’s inflammation, her rheumatologists told her half of a serving of fruit a day and we flipped that script completely, pretty much removed everything from her diet from AM till dinner time. And she’s been just eating raw fruits throughout the day and grazing, as needed.

Lupe:     Yes. Yes. And I felt really good. You know, you go to a rheumatologist or a dentist or whatever and they don’t have, they don’t give you the same information. Some of it is contradicting but you kind of do what works for you.

Brian:    And I’m sure we’re all old enough to where we’ve watched the news and doing this is bad for you and then a year later doing this is good for you. And it’s the same thing and there’s, even within the scientific community there are contradicting thoughts. And again, non-drug related, non-evasive, diet based or activity-based suggestions in my opinion are always worth trying.

Brian:    So get outside of your comfort zone, a little bit and try. Take responsibility for managing your condition and how you’re feeling and try some things you normally wouldn’t think of. We’ve had really good results. Thinking outside of the box and trying these alternative types of solutions,.

Lupe:     Like the Tart Cherry, the juice I wasn’t really a fan of, but I don’t mind the taste of it in capsule form, in my shake. And that works for me.

Brian:    It could have a lot to do with the reduction of your inflammation.

Lupe:     And I have more energy since my inflammation is receding, so I’m going to keep doing what I’m doing.

Brian:    And again, you know, we typically say make one change and live with it for a little while so you can see how it truly affects you. Well, what she was experiencing was kind of radical and we made so many changes within a short period of time. We’re not exactly sure what has helped the most. So, you know, now we have to reverse engineer that. We have to take a change away to see how that affects her to try to figure out what is working, what’s not working. But so far, so good, happy wife, happy life. And she’s got a smile on her face.

Lupe:     I like it. I got my wings.

Brian:    They can’t see you.

Lupe:     I know but tell them what I’m doing.

Brian:    She’s flapping her arms.

Lupe:     Well, because you know why, um obviously 10 pounds everywhere, not like just my legs or my belly. It’s just everywhere, all over my body. So my arms were really hard, like if I was doing exercise.

Brian:    Like a blown up balloon.

Lupe:     No, no, no, no, like a, okay, yeah sure, like a blown up balloon, but it was hard. Like when you do, lift weights, you know it was hard and I knew it was inflammation cause I haven’t been working out like that. But now I’m actually excited because it kind of flops around, you know, I need to now I do need to start lifting weights or doing something, but I’m just excited because I feel good.

Brian:    And her fingers are almost back to normal. They don’t look like little sausages. She’s doing good,.

Lupe:     Feeling good.

Brian:    And again, we made a lot of changes drastically and not all of them were the advice of doc. However, the changes we made, they weren’t drastic enough to where they could have harmed her, and they’ve worked and we’re going to now reverse engineer it and try to figure out what change did the most for her.

Lupe:     Well, maybe I, I definitely do want to introduce veggies back into my diet because they’re good for you.

Brian:    Well, it’s not like you haven’t had any veg we’re still having a well-balanced dinner.

Lupe:     Yeah.

Brian:    Consider the source. Talk to your doc, think outside the box and do what you feel is best for you with the guidance of those you trust with your health decisions.

Lupe:     Well, if it doesn’t sound right, don’t do it. Do what you feel is right for you. Definitely

Speaker 2:           For sure. So, coming up October 6th CicLAvia, free of charge, just a fun day on the bike, cruising through downtown Los Angeles. October 19th we would love for you to join us for the LA Area Walk for Sjogren’s. It is going to be in La Mirada and we have Team Living Sjogren’s Strong raising money for the Sjogren’s Syndrome Foundation. We would love for you to, A join the team, commit to raise $250 for the foundation. If you don’t want to do that, come on down and join the walk. There is an entry fee. I’m not exactly sure what it is.

Lupe:     I want to say it’s $40 but.

Brian:    I think it was, it was $40 last year, so somewhere around $40 and you get the walk tee shirt and come down and enjoy the festivities for the day. And if you’re unable to join the team or come down and walk in support of the foundation, please hit the links in the show notes below and donate to Team Living Sjogren’s Strong. And if you happen to live in an area where there is not a walk for Sjogren’s and you would like to inquire about starting a walk in your area, please contact us and we will put you in touch with the person at the foundation who is in charge of all of that.

Lupe:     Actually we’ve received several requests from different parts of the US, not only the US just everywhere. When are you guys going to come over? Come have a walk over here. So we’re going to share that with the foundation.

Speaker 2:           We are, and we’d love to see these walks happen more frequently and in more locations because at the end of the day, we’re all participating in raising money that is going to great cause to fund research projects for Sjogren’s Syndrome. Spread the word, educate doctors, dentists, whole nine yards.

Brian:    So if you’re unfamiliar with the work that the Sjogren’s Syndrome Foundation is doing, please visit Sjogrens.org and you can learn all about them there. If you’re not a member, join because you get the wonderful newsletter called the Moisture Seeker. And how often does that come, Lupe?

Lupe:     I want to say once a month, comes out. And then you get your quarterly.

Brian:    So yeah, and it’s filled with lots of great information. Um, and the website’s packed with information. We discussed some of the downloads, uh, last week. We hope you took the opportunity to check them out. With nothing left to do.

Lupe:     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
http://events.sjogrens.org/site/TR/Events/General?team_id=2166&pg=team&fr_id=1320

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