Sjogren's Strong

Introduction

Find a Support Group

Living with a Chronic Illness isn’t always easy. We find and encourage you to find a support group that you can attend and/or participate in, It can make a world of difference. Lupe & Brian discuss a support group supported by the Sjogren’s Syndrome Foundation that they recently attended and the awesome materials covered during the meeting.

Find a Support Group

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 a diagnosis of Sjogren’s Syndrome.

Lupe:     Before we get started today, I wanted to give a big shout out to Susan Barajas.

Brian:    Who is a board member of the Sjogren’s Syndrome Foundation and runs a support group here in the greater L.A., Inland Empire area.

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Lupe:     We attended Susan’s Support Group on Saturday and it was so positive, hands down, the best support group that Brian and I have ever attended. And I’m including Brian because he’s an awesome husband and he always goes with me when I, you know, to like doctor’s appointments or support groups, he’s my support system. And it was very educational, positive, informative. It was just awesome.

Brian:    And it was night and day from the other support groups that we’ve attended. To give you an idea, the first one we went to was 10 years ago, but when we left after a little talking, I discovered that we had completely different experiences. I went in there with no expectations. I figured we’d learn a little bit about how to manage this and maybe some great resources. Because we were just learning what Sjogren’s was, back then. And, you know, I turned to Lupe and she’s crying and I’m confused.

Lupe:     I’m not a crybaby. The last 3-4 episode, it’s like, she’s crying. I really don’t want to cry that much.

Brian:    And she doesn’t. And when she is, I know something’s really wrong.

Brian:    You know, for her, she’s looking around the room and thinking, oh my goodness, the realization that I’m going to have this for the rest of my life, I think, set in that day. And people were talking about the drugs and the treatments and I think it was just a bit overwhelming.

Lupe:     It wasn’t a negative experience by any means. It was very well organized. There was a lot of information. They passed out a lot of information. They had an ophthalmologist talking about glasses and your eyes. But as I’m looking around the room, everybody was older than me.

Brian:    I think a lot of realization set in that day. And you know, she said she never wanted to go back to another support group, ever again. Well, fast forward years later. We’ve tried a couple now and Susan’s group, yesterday was phenomenal.

Brian:    And let’s start off with first things first. We had agenda. We went through that agenda. Everybody was allowed the opportunity to speak. Everybody was respectful of others when they were speaking and just very well managed meeting. So moving on.

Lupe:     So, to start off I wanted to give you a little update of how I’ve been feeling. And if you haven’t guessed, I’m feeling awesome. I’ve been feeling great for the last several days.

Brian:    The inflammation is receding.

Lupe:     Yes. Yes it is.

Brian:    She’s been in a much better mood.

Lupe:     Well, that’s what you’re saying now. That’s not what you were saying earlier.

Brian:    Well, that’s what I would tell anybody.

Lupe:     Um, yes, the inflammation continues to go down. I’ve actually, I’ve lost eight pounds, I think last week I said five, but uh, slowly, slowly, slowly I’m losing the inflammation. And so, so far today is Sunday. It’s at eight pounds. So hopefully by once they, there’ll be like 10.

Brian:    You did something radical with your diet.

Lupe:     Okay. I don’t remember if I mentioned this or not, but just in case I didn’t and I’m sorry if I did, but I’ve been eating raw fruits throughout the day, uh, until dinner time. That’s when I have a good dinner, whatever, Brian’s cooking.

Brian:    So, she’s drinking tea. Have you been having Gatorade?

Lupe:     No!

Brian:    Gatorade’s gone. So she’s been having tea, water, fruit until dinner. Dinner’s been well balanced meals the last few weeks.

Lupe:     And I’ve been feeling awesome. I was a little bit worried at first because I thought maybe I was having too much sugar with the fruits, but it’s natural. But, uh, I’ve been feeling really good. And believe it or not, guys, Brian always rolls his eyes when I bring this subject up, but it’s helped me poop. So I’m back to pooping twice a day. Is it the fruit?

Brian:    Well, fruit, fiber, lot of fluid.

Lupe:     So, I’m excited about that because you just feel better. Right?

Brian:    She’s had a lot more energy, has had a better mood, more engaging, more energetic. It’s been awesome to see. So hopefully we can slowly cut back off the fruit and work some vegetable back into the diet just so it’s balanced. But getting you through that funk and all the inflammation is step number one, which we, I think we’ve achieved.

Lupe:     A coworker of mine, he has problems, he talks a lot about inflammation, as well. And so I started talking about my inflammation. I didn’t say specifically what’s causing my inflammation, so I didn’t say I had Sjogren’s. I just said I have inflammation sometimes. And he said, do you have problems sleeping? And I said, actually I do.

Lupe:     And then I had kind of light that light bulb moment to where if he has inflammation and he can’t sleep in bed and I have inflammation and I can’t sleep in bed, maybe it was the inflammation that was causing all the pain, when I sleep.

Lupe:     So I kind of put two and two together and I tried sleeping in bed for a few hours and I think that’s what it was because now that it’s receding, I’m not in as much pain.

Brian:    Which is awesome.

Lupe:     I know you miss me.

Brian:    Who else can I foot cuddle with? It’s been too hot, the dogs don’t even want to sleep with me.

Lupe:     I know. So, we kind of toe cuddle. He’s on one end of the bed and I’m on the other side. It’s funny

Brian:    Enough with the jocularities. Next I want to go over some of the information that she shared because I feel it is important for everybody to realize that these resources are here. Just a couple of clicks away on a computer.

Brian:    In talking with some of you and a lot of you, there’s a percentage of people listening and following Sjogren’s Strong that are or were unfamiliar with the Sjogren’s Syndrome Foundation and these are some of the great resources that the foundation offers.

Brian:    So, number one was a one page front and back sheet on ocular management. The second one we went over was oral management. The third one we went over with systemic manifestations in Sjogren’s patients.

Brian:    And these were all clinical practice guidelines. These were researched and put together for your doctors. We encourage you to hit the links in the show notes below. Those links are going to take you to the foundation’s website, to where you can download these documents. We encourage you to do so.

Brian:    Email it to your doctor, your eye doctor, your dentist, print them, take them with you to your next visits. But these are the guidelines that have been created by the foundation. This is for them to help them have a better understanding of how to take care of your eyes and mouth because you have Sjogren’s. And your rheumatologists because you have Sjogren’s because not all rheumatologists are that familiar with Sjogren’s Syndrome.

Lupe:     And there was also a four page brochure and it’s titled Living with Sjogren’s, a summary of major findings.

Brian:    Yeah, and it’s got some great information and statistics regarding, you know, how many people with Sjogren’s have dry mouth versus fatigue versus joint pain, etc., and so on.

Brian:    Really great read, really good job. Talks about changes in the home, changes at work due to Sjogren’s. A lot of great information. So these four links will be in the show notes to this episode.

Brian:    And we encourage you to click, download, print, if you prefer paper. But have these resources not only at the ready for your doctors but consume this information and learn a little bit about what it is you are dealing with.

Brian:    The other awesome thing that we learned, is the fact that there are 10 plus drugs in the pipeline, right now, that the is supporting, funding and pushing through the approval process, that actually treat Sjogren’s Syndrome. They’re not treating a symptom of Sjogren’s Syndrome. They are actually treating the syndrome in and of itself. And this is the great work the foundation is doing.

Brian:    So we encourage you to hit their website and check them out. We’ve been talking a lot about it lately because we have Team Living Sjogren’s Strong participating in the Los Angeles area walk for Sjogren’s, in October of 2019. That link will be in the notes, as well.

Lupe:     I feel like finding the right support group is like shopping for a car. You have to find the one that’s the right fit for you in order to get the most out of it. Brian always says that you are the sum of the five people you hang out with the most, and I believe that wholeheartedly.

Lupe:     So, look for groups around your area. If they have more than one group, attend to all of them. See which one is the best fit for you. Because if you are in the wrong group, it’s like you are in the wrong relationship. You’re not going to grow. You’re not going to feel better. You’re not going to want to go. So, I encourage you to go to as many groups as you can, until you find the right fit for you.

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

Links

The Foundations support groups – https://www.sjogrens.org/home/get-connected/support-groups

Downloads

Clinical Practice Guideline’s – https://www.sjogrens.org/home/research-programs/clinical-practice-guidelines

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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