Lupe & Brian: Welcome to another episode of Sjogren’s Strong.
Lupe: This is Lupe.
Brian: And this is 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 noticed in listening to last week’s episode and previous episodes, but especially last week, that I say “you know” a lot. After every sentence, after, you know, every so many word. And so today to make it fun, I’m going to try to avoid saying, you know, this one doesn’t count, neither did the last one. And every time I say that I am going to make a donation of $1 to Team Sjogren’s Strong in support of the 2019 L.A. Walk. What do you think?
Brian: Who wants to play along? Who has that catchphrase that they always use, that even annoys yourself? Play along with us. Let’s help the Sjogren’s Foundation raise money in support of the 2019 L.A area walk. And this is on the honor system if you want to play tally that up, report at the end of the week, how much you donated to the foundation. The link to Team Living. Sjogren’s Strong will be in the show notes.
Lupe: And if I say it too many times, if I say it at all cause I know I will, call me out on it. Okay. I’m curious to know how many times you guys catch it.
Brian: Making tick marks over here.
Lupe: Well, you know, the weird thing is that I don’t even realize that I do it and I don’t do it in person when I’m having a regular conversation with someone, so I don’t know why I say it on this podcast, but I do.
Brian: We all have our little sayings.
Lupe: Oh, okay, so last week we spoke about anxiety. We thought it was time to, you know, oh, I said it.
Brian: There’s one.
Lupe: We thought it was time to talk about anxiety because I’ve been feeling the funk, for a couple of weeks, maybe a week, a couple of days.
Brian: And I kind of attribute that to, she’s a few months into a new job, but she has new insurance and she’s got to see new doctors, new clinics, new hospitals, new labs, new everything. And in the back of my mind, I thought that might be a source of some of this anxiety.
Lupe: I have a new job that I totally love, best move I’ve ever made. But taking the time off from a new job, I think that was causing me some kind of anxiety. Because I’ve only been there maybe three months and asking for time off, I think, it’s not really my style, especially, when I’m so new. So, that was causing me anxiety. It’s a really cool place. I love it. The people are awesome, there’s a lot of work but I’m not stressed. It’s a really cool environment but it was still causing me stress.
Brian: So, I just kind of sat back, did my best to be supportive and encouraging and supportive of these new upcoming appointments. She had appointments with new doctors, labs, blood draw, eye doctor, eye dilation and she kind of got through it. And over the weekend this is what transpired, and it totally ties into a topic of today, which is a continuation of last week’s episode, chronic illness, and anxiety.
Lupe: So, this weekend I came home from work on Friday and I kind of just didn’t do anything. Got in my recliner, pulled the covers over me and I fell asleep. When Brian got home, I was sleeping and he got home and I think he was tired. He had a long day at work, And he kind of made this face like, like he was frustrated with something.
Lupe: He walked in, I was sleeping, there was dirty dishes, there was nothing to eat. And I felt a little bit bad because I felt like I haven’t been pulling my weight lately. So he sets everything down, ugh, just stops it, goes straight to the kitchen, starts washing dishes. And then he goes, uh, changes his clothes, gets into something comfy and then he comes back and he starts cooking.
Lupe: So, I get up, I’m really tired, fatigued. I get up and I’m like, can I help you? And he’s like, no, just go away. He didn’t say that, but he’s like, no, I got this.
Brian: And I think she’s reading into it a little bit. And I explained to her today, that has been in the service, I’m very mission-oriented and about the last couple hours of my workday, in my mind, my mission was to accomplish everything I needed to accomplish, so I could sit down in the recliner and decompress a little bit. It’d been a long week. It been a 12 hour day. I just want to relax. I want to think of nothing. I want to move, no muscle, I just want to breathe.
Brian: And I came home and yes, there are chores that need to be done. And I was not frustrated with her. I was frustrated at the fact that, ugh, I have more work to do before I can accomplish my mission
Lupe: What was your mission?
Brian: To sit down and do nothing.
Lupe: Like I was doing.
Brian: So yeah, dishes got done, foods got to get preped, dinners cooking, cleaned up after the dogs, fed the dogs. And she jumped in and started doing dishes. And I told her, you don’t need to do that. I’ve got it. Um, and she did them anyway, which was very cool of her.
Lupe: But she read me as being frustrated at her and that wasn’t the point. I was just frustrated at my mentality because if there’s work that needs to be done, I can’t sit down and do nothing. I have to get the work done so I can completely relax. Or if I did sit down, I’d be sitting there thinking, oh I got to do dishes. Oh, you know, I got to cook dinner. Oh, the dogs need a clean backyard. Oh, you know, and I just can’t relax. So, I needed to accomplish those things so I could accomplish my mission.
Lupe: Where me, I’m like, I’m just going to sit here and fall asleep. I don’t care about the dishes, I don’t care about the laundry, I just want to sleep. Plus I didn’t have any motivation. I was feeling the funk.
Brian: And she was. And I asked her if she was okay. She was lethargic, slow-moving, quiet. And I thought maybe she was getting physically ill. And she just had had blood work drawn, a lot of vials. Ten plus vials.
Lupe: Yeah, so I think that zaps my energy cause it’s a lot of blood,
Brian: Right, so I want to make sure that she physically is cool. And you know, she assured me everything was fine. Okay, cool. Let’s, let’s move on. But then Saturday rolls around.
Lupe: I get up, I have energy. Most of my energy, I have it in the morning and sometimes it takes me a while to drag myself out of bed. But once I’m up and around I’m okay. So I’m like, what are we going to do today? It’s too hard to go for a hike. So I just wanted to get out and walk. So I said, why don’t we go to the swap meet? We have a few local swap meets here and we just like going and walking around, people watch.
Brian: And on occasion, I do find cool little treasures, that I have to have, that just make my life complete. Okay. I’m lying, but I still buy them.
Lupe: So anyways, I don’t even know what we were talking about.
Brian: We, okay.
Lupe: I don’t remember.
Brian: We were leaving the swat meet.
New Speaker: Yes.
Brian: And from a previous episode, we talk about her crying at the swap meet before.
Lupe: Yes. I just lost it
Brian: We’re leaving the swap meet and she’s got her phone out. I think we’re already sitting in the jeep and I look over and she’s looking at a post she put on Instagram of Doctor Ryba a few days ago because it was two year anniversary of his, his passing. And I had this light bulb moment of wow, two year anniversary. He’s no longer with us, he’s no longer treating her. She’s experiencing all of these new doctors, which is making her miss him that much more.
Lupe: I was sitting in the car and I was just, kept going back to Instagram and I just kept reading what I said. Reading when he passed, I wrote something, my condolences and you know, I took a screenshot and I kept reading that and looking at his picture. And then I think I said something like, Oh, I really miss Dr. Ryba, I can’t stop looking at him. And that’s when you said, ding, ding, ding, light bulb moment. And so when he said,.
Brian: And, and it was something along the lines of, that’s got to be it, you’re missing Dr. Ryba, you’re all the this new.
Lupe: Boom. And as soon as he said that, I just lost it and I started balling and I’m like, you know, well you just can’t control it. And a list is such an emotion and I couldn’t stop crying. We kind of talked it out a little bit and he was right because I had a good cry for about 15-20 minutes, while we’re in the ca, while we’re driving home or wherever we were going. And that’s exactly what it was.
Brian: And all of that stress is gone. We had an awesome Saturday afternoon. We’ve had an awesome Sunday, which is today. And that leads us to, I guess the main point of today’s episode,
Lupe: Having someone to talk things out with is really helpful. Brian’s my confidant. He’s my rock. Great shoulder to cry on. Sometimes you don’t realize, you know, you’re going through stuff, you don’t realize why you don’t realize what’s going on. But like he knows me so well. And when he said that, I don’t know, and I cried it out. And even this morning, I have to confess, I cried a little bit to this morning because we were in our home office.
Brian: We were planning this episode talking about Ryba again.
Lupe: Yeah, yeah, yeah. Well, we were talking about Ryba, but, um, I said, I know I’m not pulling my own weight and I feel bad.
Brian: And that’s when we got into the whole conversation about what she took is me being frustrated at her on Friday. Because I’m truly not frustrated with her. It’s hard for me to quiet my mind and if I know there’s something that needs to be done or should be done, I need to accomplish it, if I’m going to rest.
Lupe: And I guess I’ve been a little bit stressed out, as well, about feeling like I’m not pulling my weight, you know. Dumping everything on Brian. And I guess that causes me a little bit of anxiety, also because even though he says he doesn’t get frustrated, does he?
Brian: I don’t know. I don’t think so. Uh, he never makes me feel like he does, but uh, probably because I was feeling the funk on Friday and Saturday. That’s why I felt like that. But crying it out on Saturday and today, it’s like crying cleanses the soul. So today has been an awesome day. And um, thanks Brian for being my rock.
Brian: That was a cool 13 1/2 minutes of storytelling to get to this point, is having a confidant to talk things through with, to talk things out with. You know, Lupe and I had been talking about this, I guess it all kind of came to a head Friday, to where I really noticed that she was withdrawn and that anxiety level was just peaked.
Brian: And fortunately, she and I were able to talk it out together, and come to a realization and have been able to move past it. And this has to deal with the five stages of grieving, as well, because A, the five stages don’t have to go in order. There is no timeframe. You can feel 1, 2, 3, a month later, feel two again two months later you’re going through four. And then a month after that you’re back at one. And there is a grieving process and she’s obviously still grieving Dr. Ryba and that’s perfectly acceptable and it came to a head because she seeing new doctors
Lupe: And about a year ago, also, I kind of went through the same thing. And you hit the nail on the head last time too Because I was making new appointments with the new rheumatologists. That’s what I was doing. I was looking and I saw a couple until I found one that I sort of liked. But that’s what happened last time twos.
Lupe: So what I decided with this new doctor that’s coming up, the new rheumatologists and ophthalmologists and dentists, everything because with the new insurance I have to see everybody new. I decided that it’s not fair of me to keep comparing every new doctor that I see with Dr. Ryba, I have to walk in, give him a chance. Walk-in with an open mind because if I don’t, I’m just shorting myself.
Brian: You know, he was such an awesome doctor to me. And again there’s a lot of awesome doctors out there. I just need to give them a chance. So I just need to go into my new appointments with an open mind and not think I’ll be okay. And I asked Brian to go with me this time to my new rheumatologists and he agreed. So that makes me feel better. I’m a big girl, but uh, I don’t know. I just like you there.
Lupe: You know me. If I can rearrange, cancel, I will for you. You’re my priority.
Brian: Thank you. I’m usually, I usually put on my big girl panties when I go to the dentist, but, uh, this time I’m still wearing my big girl panties, but I don’t know. I just definitely do want you there this time. TMI. I don’t know. But uh, there it is.
Brian: To quickly continue this conversation, the Living Sjogren’s Strong Facebook group, it just pleases me and really brings a smile to my face, how this Facebook group has grown and matured. And I’ll get a notification that somebody has asked a question and by the time I click on it and get to it, people in this group are already answering.
Brian: And that’s so cool to see this community grow and that we’re in this with each other and for each other and willing to give of your time and your advice and your experience to help somebody out. So many people that have come to this group lately have been newly diagnosed and I’m sure everybody remembers Lupe, when you were told you have Sjogren’s Syndrome, what was your first question?
Lupe: The first thing out of my mouth was, am I going to die?
Brian: Right. And I’m sure a lot of these individuals coming to the group have these questions and they have these anxieties and they have these fears and the group is so coming together to take care of one another and it really, really puts a smile on my face to see that group do that.
Lupe: Mine, as well. It’s really awesome.
Brian: Definitely. Um, before we close here, I’d like to remind everybody about the Sjogren’s Syndrome Foundation 2019 LA area walk. Sjogren’s Strong has formed Team Living Sjogren’s Strong and we will be walking in the 2019 LA area walk for the Sjogren’s Syndrome Foundation links are in the show notes below.
Brian: If you are in the area, we would love to have you join the team. You will be committing to raising just $250 for the Sjogren’s Syndrome Foundation. You get your own little webpage, you can put your picture up, tell your story, share it with your circle. They keep track of how much money’s coming in in your name. And it’s a really cool thing to experience if you’ve never been part of a fundraising team for a nonprofit before.
Brian: If you are not in the area and you would like to support us on that same link, you can donate to the team. On the right-hand side, you will see Lupe’s name, Todd Devo’s name and Serene’s name and myself.
Brian: The four of us make up Team Living. Sjogren’s Strong, so far. We want to grow that, but you can click on an individual name and donate to that individual part of the team to help them meet their fundraising goal. And that also helps the team raise their fund raising goal.
Brian: And I really didn’t want to tell anybody that because I know everyone’s going to be donating to Lupe and I’m really going to have to work hard to hit my $250 goal.
Lupe: That’s funny. And also if you want to sign up on your own, you have that option, as well. I believe it’s $40.
Brian: Last year it was $40, I’m not sure what it is this year, but it’s about $40 to sign up on your own and you get a tee-shirt.
Lupe: Yeah, you got a cool shirt. So that should be fun.
Lupe: But if you do the sign up on your own, we’d love to meet everybody. We’ll be there saying hi to everybody with our little cool Sjogren’s Strong shirts. But please come up to us. Say Hello. It’s fun. I’m looking forward to it.
Brian: It’s going to be a good time. So if you’re not in the area and ah, you’re not in a position to donate to the team or to one of the individuals on the team, please like and share these episodes, these posts, share them with your circle. So your circle of influence hears this call to action to help raise funds for the Sjogren’s Syndrome Foundation and they may be in a to donate and help the Sjogren’s syndrome foundation meet its fundraising goal.
Brian: Be sure to follow us on Instagram, Facebook, and Twitter.
Lupe: And if you guys are ever feeling the funk, we’re definitely here for you guys. And, uh, we’re trying to get through life together.
Lupe: Until next time, sip constantly and stay hydrated.
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