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.
Lupe: So, this week we’re going to talk about chronic illness and anxiety.
Brian: I often say it goes without saying, however, in my experience, not talking about something isn’t always healthy.
Lupe: Brian and I have been discussing doing an episode on anxiety, for a long time now, and here we are giving it a go.
Brian: So, in doing some research for this episode, I came across a cool article that actually talked about the anxiety that a caretaker might feel. And I felt it important to include it in this episode because I know a lot of you share this with those in your circle, that might be in a position that helps you or takes care of you or helps you on any level, even if it’s just emotional support.
Brian: And I don’t really consider myself a caretaker. Lupe is quite capable of taking care of herself.
Brian: She might like me to do everything for her. However,
Lupe: I do.
Brian: I, again, this tugged at my heartstrings because I do love and care for my wife, a lot, and I do as much as I possibly can to help her get through her day in as comfortable of a manner as possible. So we included this.
Lupe: And Brian, I’d like to take this opportunity to say thank you very much. I really appreciate you because you do, do a lot for me.
Brian: You said do, do.
Brian: I love you too, Preciosa.
Lupe: Okay. So let’s start by defining anxiety; Intense, excessive and persistent worry and fear about everyday situations. Fast heart rate, rapid breathing, sweating and feeling tired may occur.
Lupe: So for example, I want to talk about losing Dr Ryba, a couple of years ago. Dr Ryba, he was my first rheumatologists and I received a letter in the mail, a few years ago. It’s actually almost going to be the two year anniversary of his death. And I received that letter in the mail and I just, I just lost it. And I never thought that I would cry for a doctor and mourn a doctor, but I did.
Brian: And that caused a level of anxiety in her. First, she’s going through the grieving process. Secondly, reality sets in and the anxiety of having to find not only a new rheumatologist, but a rheumatologist when the bar had been set so high by Dr Reba. And to the caretaker’s side of it, I started anxious because she’s feeling anxious about having to find a new doctor, and I know she’s struggling. She’s struggling emotionally. Um, which is causing or helping to cause physical pain. It’s just, it’s this cycle that a tragedy, like that puts us in.
Lupe: I just didn’t know what I was going to do, what I was going to do without him. Who am I going to go to? Who’s going to care about me like he did? You know, when I go to the doctor and get labs, my veins collapse. So, that makes me anxious. You know, even though I know what to do. For example, I drink a lot of water the day of, the day prior. You know, to the point that you had to get up a million times a night, to go pee because you drank so much water. I mean, just that kind of stuff.
Brian: To the point of labs, when she has a lab appointment, coming up, she’s what’s called a hard stick. Her veins will collapse. And Dr Ryba took the time to talk to her about that and explained to her to hydrate and get some electrolytes in you the day before your labs and you’ll be an easier stick. And that advice has stopped her from getting poked four and five times, to them pretty much getting at first pull, if she takes that advice.
Lupe: So, they would poke me on both arms, inner elbows, ha ha. And then my veins would have collapsed so, they would get my, um, my hand. And that’s extremely painful.
Lupe: So, I mean, Dr Ryba told me a lot of things. Um, he said, what are you wearing when you go to the lab? Are you wearing a jacket? You need to wear a jacket, maybe gloves, you know, keep your, keep your body warm. And pump your hands, you know.
Lupe: And all that stuff it just stuck with me. But, even though I know what to do, just the fact that I know that I need to go get lab work, it causes me a lot of anxiety and it makes me a harder stick, unless the person is really good.
Brian: The simple fact that also telling your lab tech that you are a hard stick, has in the past, caused them to go, oh well let me go get Barry. He’s better than me. And Barry gets it the first shot.
Brian: So we know these people need to practice their skill of catching a vein. However, when somebody with a chronic illness says, look, I’m a hard stick, is there anybody here that has experience with this? They might accommodate you, which is going to help decrease that anxiety, as well. And when you do find somebody that is good, request them. Ask them if they’re going to be there when you get your appointment.
Lupe: Yeah, but you know what, sometimes they’re going to be like, I accept that challenge.
Brian: Sometimes they will.
Lupe: And they say they’re good.
Brian: I want the practice. I want the hard stuff .
Brian: You can ask. It doesn’t hurt to ask.
Brian: So, here’s some typical symptoms, that suggest anxiety is at the level, to where you might want and, or need to seek some treatment.
Lupe: For those suffering with a chronic illness, anxiety about treatment or future diagnosis, that can cause stress.
Lupe: Avoiding necessary treatment because it provokes anxiety or sadness.
Brian: And Lupe, you’re guilty of this one.
Lupe: What ever do you mean?
Brian: Lupe, have you taken your meds today? I’m a big girl. You don’t have to remind me.
Lupe: You’re not my dad!
Brian: So, I’ll translate that into, no, I haven’t taken my meds, yet.
Lupe: You guys know what he started doing with my meds?
Lupe: He started facing them like backwards with the label backwards or upside down. And I’m like, what’s going on with the meds? And that’s like, he’s being a little tricky dicky. And um, and that’s all he knows if I take my meds or not.
Brian: If they’re in the same position. I know you haven’t touched him.
Lupe: And he’s like, did you take your meds? Yes. And he’s like, no you didn’t. Thank you Brian. I appreciate that.
Lupe: But, I’m a big girl, you know what I mean?
Lupe: Repetitive nightmares or intrusive thoughts about diagnosis or treatment of your medical condition?
Lupe: Inability to sleep due to stress about your condition.
Lupe: So for me, let’s say sleep, sometimes I could sleep on command. Sometimes I fall asleep on the phone. As I’ve mentioned before, if I’m on Facebook, I friend people and next thing you know, they accept me and I’m like, what the heck? When did I request you?
Lupe: But, I ,sometimes I just fall asleep on command. Brian’s talking to me, he faces another direction, turns back and looks at me and I’m sleeping. And I can’t believe it, but it’s true. Other times I can’t sleep.
Lupe: Okay, one time, and actually not too long ago, I didn’t sleep for two nights. And I was like a Zombie at work because I still go to work. Not really functional. But, uh, my point is sometimes I can’t sleep.
Lupe: Anxiety about not properly following the treatment regimen.
Lupe: Inability to talk to others about how you feel about your condition. For example, me, not a lot of people know about my condition. Um, for example, you know I have a new job and I do not talk to anybody about having Sjogren’s, because for me, I feel like that becomes who I am, you know?
Lupe: A couple of friends that I’ve told, I don’t know if I want to go there, but you know, if you tell, they’ll always ask you, are you okay? Are you okay? And it’s like, I’m fine, I don’t want to talk about it. Because again, it becomes who you are, you know. You lose your identity if you tell people.
Lupe: Avoiding of socializing because of your condition. When my brain fog is at its peak, I don’t really want to hang out with friends, family, because it’s hard to talk to them. It’s hard to find the right words, you know? Sometimes, sometimes I do have to sign, you know, and I just, I just don’t want to put myself out there like that. So, I’d rather stay home.
Lupe: Plus a lot of times I’m really tired. Lately, the last week or so I’ve just been really tired. All I want to do is sleep. And do I want to go see family? Do I want to hang out with friends? Yeah, sometimes I do, but you know, I choose me first. I want to take care of me, so I choose not to go, just to stay home and rest because my body, that’s what it’s telling me to do.
Lupe: Shame and self-blame about your condition. I don’t feel that I have shame about my condition. I don’t talk about it. Does that mean I have shame? I don’t know. What do you think Bran?
Brian: I think shame is a strong word. Maybe, and I don’t want to say you’re embarrassed about having Sjogren’s. But going back to avoiding socializing, if you’re avoiding socializing because you’re more prone to misspeak when brain fog is at its worst. I think that’s more of your avoiding the embarrassment, which is different than shame. So, I don’t think that applies to you, but it might apply to some.
Lupe: Well, for example, once upon a time, this happened several years ago and I’m finally coming out of my shell. I lost my words there for a while. I mean, most of my words. I just didn’t know how to communicate with Brian, except for sign language.
Lupe: We would go to a restaurant and I was embarrassed to tell the waiter what I wanted because she was going to talk to me, she was going to ask me questions and you know, do you want white or wheat? It’s like aww. I would look at Brian like, aww, and he would ask her for me, you know?
Lupe: So anyways, it just got to the point where he would order for me, you know. He would say, okay, so she’ll have this and I’ll have that. And recently I kind of got out of my shell a little bit and I just jump in ahead of him and I’m like, hey, I’m a big girl, I could order it for myself, you know. But honestly, sometimes I feel like I don’t want to talk to them either, you know? So, it’s weird.
Lupe: Loss of pleasure in activities you once enjoyed.
Brian: Once upon a time she loved the beach. And being in the sun, in the wind, in the sand, that’s going to dry you out. It’s just something she doesn’t do anymore. We might go down to the beach and take shoes and socks off and walk for a little while, but hanging out all day.
Lupe: I used to spend my weekends at the beach. I used to take days off to go to the beach. I used to go to the beach after work. I used to live at the beach. And now, I can’t do it because it dries me out. I get a heat rashes, you know. My skin gets itchy.
Lupe: Do I miss it? Yeah. Sometimes we’re driving down PCH down the coast and uh, I’m just staring at it thinking, you know, back in the days when I was able to just lay there. So, I do miss that. But I got a new hobby. It’s called napping. And I enjoy that too. But we do go hiking and depending on where you hike, you’re under the trees, so.
Brian: Yeah, her favorite hikes are along a water source, like a stream or river, where there’s lots of growth, lots of trees. It’s cool and damp. And she does better in those situations than, you know, at our local regional park. Peters Canyon doesn’t offer much shade or in the desert, you know. We can’t do a lot at some of the foothills and in the higher elevations because of the lack of, of greenery.
Lupe: And especially right now with this heat, it’s like 90 degrees. I stepped out for lunch from my office to my car about 10 feet from the door. By the time I got to my car I was sweating, you know, so I just can’t do it. Which brings us to our last.
Brian: Chronic irritability. She swears she doesn’t have this.
Lupe: I don’t.
Brian: And because a happy life is a happy wife. I’m going to agree with her.
Lupe: Whatever do you mean?
Lupe: Please email me Brian@Sjogrenssrong.com and we can talk about this one offline.
Lupe: Come on now. Are you saying I’m making your life miserable, sometimes?
Brian: Not at all.
Brian: So, I’m going to run down a short list for caretakers, feeling or experiencing increased anxiety when they are helping somebody with a chronic illness.
Brian: Avoiding pleasurable or meaningful activities because you feel guilty about taking time away from the one you love.
Brian: Inability to sleep.
Brian: Anxiety about falling short with care or encouragement. And this one I wanted to highlight because some mornings, in the morning she gets up, bathroom light comes on, the dogs go over to the door and lay down cause they want to be with mom. I know she’s awake, therefore that triggers me to go make her tea.
Brian: Well sometimes, I’m on the phone working or a news stories on and I forget to start the tea. Well, when I start the tea, when it ends, it clicks. When the water’s hot, it clicks off. So I now know it’s time to make the tea. And then I typically go outside, clean up after the dogs come back in. It’s time to give her, her tea. And if that’s disrupted, I forget to give her tea. And then I truly feel bad in the morning because that’s her, it’s her first cup of hydration, um, in the morning. And when I forget, I do feel bad. So .
Lupe: You know what’s weird about that? Sometimes when you do forget, you know, muscle memory, I just reach for something.
Brian: And it’s not there.
Lupe: It’s not there, which is really weird.
Brian: If she were really irritable, she would say something, but she doesn’t do that.
Lupe: Shame on you Brian. No, I don’t do that because you know why? I appreciate the fact that you do it and you don’t have to. So, I’m not going to, I’m not going to throat punch you because you don’t bring me in my tea.
Brian: I do feel anxiety when she has upcoming appointments. For example, she has labs tomorrow, so I know this evening I’m going to be watching her fluid intake like a hawk, making sure she’s getting electrolytes and just trying to drown her with fluids this evening, so she’s in easier stick tomorrow.
Brian: And she’s going to be anxious because she has labs tomorrow and I’m anxious and the dogs go crazy cause they feel the anxiety and it’s just going to be an awesome evening.
Brian: But that’s, you know, anxiety about future treatments for that individual with chronic care. You may feel some anxiety, as well, for the examples I just shared.
Brian: Inability to enjoy activities you once found pleasurable. We don’t get up to the desert, as much as we used to, because the deserts pretty inhospitable. And with Sjogren’s it’s that much worse for her.
Brian: I enjoy the desert. I was stationed in the desert for years and I think the desert has a beauty. Last time we, when I think was late in the afternoon and we stayed late actually early into the next morning, doing some night photography. And that’s doable until it gets too cold. And then you know, she starts to ache. So, the Jeep’s running and heaters on and she’s bundled up. The desert is just something I don’t get to do as much as I’d like to do any more. But it’s okay. I love my wife more than the desert.
Lupe: Well, when it’s too hot during the day, I feel like I can’t breathe. But why is that? I have to get like a wet cloth.
Brian: Just dry air. Super Dry air.
Lupe: Yeah. I just feel, it’s kind of scary to me because I feel I can’t breathe and it gets hot. I get tired, I get sleepy, but when it’s cold, my body aches. So what do you do?
Brian: Darned if we do. Darned if we don’t.
Brian: All right. So, to wrap this up, we’re going to talk about some tips and tricks to help deal with anxiety. And to preface that we are not medical professionals. Seek counsel of your medical professionals.
Brian: Exercise. Have you tried yoga? And I’m sure you guys have heard us say that before, but we went through like, I don’t know, five, six-week period where everybody was like, try Yoga. The dentist, try yoga. The doctor, try yoga. Fiends, try yoga.
Lupe: It’s like yoga fixes everything. I mean, yes, yoga is good for you because you stretch, you know, you feel better. I’ve done yoga in the past and yes I do feel better. But yoga can’t fixed chronic illness. Yoga can’t, fix my dry eyes.
Brian: It just kind of became an inside joke for us. So if you hear a say, try yoga, you now know why.
Lupe: So every time we’re going through something, try yoga. That’s our thing.
Lupe: Find a support group. Surround yourself with positive people and try to avoid negativity, which we know sometimes it’s hard.
Brian: And I’m going to jump in here with buddy check and we’re going to talk about this in detail a little more. In the military we did what was called a buddy check. You checked on your buddy, you had a battle buddy and his physical, mental wellbeing in totality was your responsibility and vice versa. So finding your buddy and reaching out to them from time to time is what the whole buddy check thing is about.
Lupe: You know what else you could do? You could find a cool podcast that focuses on positivity.
Brian: What’s that podcast called?
Lupe: It’s called Sjogren’s Strong.
Brian: Hey, you know, life does get the better of us from time to time, but we are doing our best to keep this show upbeat and positive. You know, we’ve said it before. We want to separate ourselves from the negativity. And yes, dealing with a chronic illness like Sjogren’s, there are negatives. However, we do our best to put a smile on her face, stay upbeat and share that energy.
Lupe: It’s not always peaches and roses. Sometimes I go through funks, like right now I’m on a little bit of a funk, but, but I’m okay.
Brian: Talk to your doctor. If you’re feeling anxiety or you feel you may be depressed or those close to you are saying, why are you depressed? Then maybe it’s time to talk to your doc about, you know, what it is you’re feeling, um, emotionally.
Lupe: Sometimes when you make appointments, they ask you, are you depressed? It’s a big deal now.
Brian: Yeah. They’re just checking your status.
Brian: Making sure, making sure you’re cool.
Brian: Or giving you the opportunity to tell them you’re cool.
Lupe: Yeah. Yeah.
Lupe: Ah, meditation is not something that I’m really familiar with. Um, I would like to read up on it and learn more about it. But, um, but a lot of people say that it helps you.
Brian: And it’s something, I think I would enjoy meditation, just calming the mind and focusing. But again, I’ve tried it in the past and then I’m sitting there trying to find a calm place in my mind and I’m worried about, did I make her tea this morning? What’s for dinner? Oh, that show’s on tonight.
Lupe: I got do the laundry.
Brian: I have an extremely hard time quieting my mind.
Lupe: I would imagine so. Yes. If I’m tired, I’m good. I got it. You know what? Now that I think about it, I would probably be good at it. Because I like sleeping.
Brian: Cause you’ll fall asleep. T
Lupe: That’s what it’s all about.
Lupe: So, we all have good days and we all have bad days, but I think it’s important to try and focus on the positive things rather than the negative things. Because if you concentrate on the negative things, you just going to go into a downward spiral. And it’s kind of hard to get out of that funk. For example, let me tell you a little story.
Lupe: A few years ago, I used to work with the coworker and we didn’t really talk, we weren’t really friends, you know, I was kind of in one department, she was in a different department and one time she just looks so pretty to me and that’s what I call her. I call her Bonita. That just means pretty.
Lupe: So, I just went up to her and I said, oh my God, you look so pretty today. I said, you look so Bonita today, you know. And I just wanted to tell you. And she’s like, oh, thank you. And that was that. Didn’t think of it. We actually became friends later on and we actually, you know, hung out together, went hiking.
Lupe: And she told me, out of nowhere, she said, I wanted to tell you something. Remember a long time ago when you came up to me and you said, you call me Bonita? I said yes. And she said, I was in such a bad place that day. And your comment just went a long way for me, you know. It made me feel better about myself, you know. So, and that just put a smile on my face because you don’t know who you’re inspiring. You just don’t know. So, if you feel something, say something.
New Speaker: So take the time to say kind words because they really do go a long way.
Lupe: And not to make this long, but recently I feel like I’ve been going through a funk. I’ve been really tired lately. Maybe it’s the heat. I’ve also been a little bit anxious because with my new job, I now have medical insurance and I’ve been anxious about trying to find another doctor.
Lupe: You know, again, I’ve been going through a funk and I try to stay as positive as possible, but I get down sometimes. I go through funks. A today I was feeling the funk, especially today. And somebody sent me this really nice message. It was unexpected and it just took me out of my funk. So my point is be kind. If you can’t be anything else, be kind.
Brian: Like my Mama said, if you don’t have anything nice to say, I’m going to beat you.
Lupe: Well, spread positivity if possible, because you just never know who you could help out.
Brian: And on that note, I want to take the time to say thank you to everybody who listens and has shared and takes the time to comment on this show, on posts across the social media platforms we utilize. We truly appreciate you and we do this for you and the community in which we’re building. And jump in on Facebook. Join the Living Sjogren’s Strong Facebook group. We would love to have you there. The more the merrier. And it’s a great place to just jump in and say some kind words about somebody.
Lupe: That’s what we’re about. That’s what we want to spread.
Lupe: Until next time, sip constantly and stay hydrated.
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