Sjogren's Strong

Introduction

5 Must Have Items

Lupe sends greetings from Guadalajara and Brian talks about 5 items that have helped alleviate some of Lupe’s complaints regarding having Sjogren’s Syndrome.

5 Must Have Items

Lupe sends greetings from Guadalajara and Brian talks about 5 items that have helped alleviate some of Lupe’s complaints regarding having Sjogren’s Syndrome.

Lupe: Welcome to another episode of

[00:00:02] Lupe & Brian: Sjogren’s strong.

[00:00:04] Brian: This is Brian,

[00:00:05] Lupe: and this is Lupe,

[00:00:06] Brian: this is your weekly podcast discussing how to live an active and healthy lifestyle despite a diagnosis of Sjogren’s.

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[00:00:13] Lupe: Hey everyone, I hope everybody had a great Thanksgiving with your families and, Brian has a really cool episode lined up for you guys. I am out of town. I’m in Mexico spending time with my family, so, he’s going to take care of you. I think we can.

[00:00:36] Brian: And possibly next cause she’s like this Jetsetter Oh, I got to go internationally travel.

[00:00:43] Lupe: I’m having fun though. But, uh, I’m trying to respond to messages and now, but it’s kind of hot over here because I don’t, we’re in a big city, but, uh, I’m limited to the time that I could spend online. So, I will respond when I get back next week.

[00:01:01] Brian: And. When she’s back on the show, she’s going to have a report of the Ziena glasses worked on that airplane ride.

[00:01:08] Lupe: That’s right. So far, I love him. So, it’s going to be good.

[00:01:13] Brian: Awesome. Well, we look forward to you coming back. I’m taking good care of your rat dog and, um. I’ll talk to you soon.

[00:01:20] Lupe: Thank you. Bye Guy’s.

[00:01:22] Brian: All right. I’m glad we were able to, uh, plan that and get her on the phone. We all miss you. Hope you have a great time and safe travels.

[00:01:33] So with Lupe being out of town this week, I kind of wanted to recap some of the products and items we’ve discussed. The holidays coming up. Buy yourself a present, or if somebody asks you what you want, maybe one of these items would be something good to put on the list for a potential gift. But these five items are all things that Lupe has. Some of them a few of and tried and they really make her more comfortable in the home. Some of them in the car and in the office, we kind of wanted to put this short list together of the top five items you should have to help alleviate some of the pains of Sjogren’s.

[00:02:23] So. Number one, a humidifier.

[00:02:26] We’ve talked about humidifiers on several episodes, and I can tell you this one item does so much for Lupe and me. On occasion, I’ll wake up in, my eyes are dry and a little crusty, and the first thing that comes to my mind is. Get the humidifier’s on, cause if my eyes feel like this, I can’t imagine what her eyes feel like and not that it’s going to immediately alleviate the way she feels when she wakes up. It is going to help make the. Atmosphere in the house, a little more comfortable for her throughout the day. So, we have humidifiers in the office, in the living room, and in the bedroom. And for example, if we’re doing chores, kind of running from room to room, cleaning up, doing things like that, we’ll turn them all on. Um, if we’re primarily in the living room, we’ll close the door to the bedroom and the office and just add the moisture to the air in the room in which we’re in. At night when she goes to bed, we obviously run the one in the bedroom, but adding that moisture to the air has helped tremendously.

[00:03:36] Number two, the weighted blanket.

[00:03:40] This was something she pondered over and read quite a bit about for a while before the trigger was pulled in. One was purchased. The crazy thing is she would sleep under five, six blankets. She liked. The weight on her, she would describe it as it cuddled her, and it just made her feel good and alleviated some of the joint and muscle pain. So, one, this weighted blanket came, um, we obviously tried it and amazingly that one blanket did the job of five or six others. Uh, I believe the one we had is 18 pounds and it completely covers her, stretched out the relief that it brings, puts a smile on my face because I can see her just get comfortable underneath the weight of this blanket. So, a weighted blanket.

[00:04:32] Number three. This is something she just purchased and started using, and it’s a dry eye compress, so it’s kind of looks like those masks you put over your eyes when you go to bed. However, it’s filled with something, I’m not quite sure what, to be honest. I’m kind of like a bean bag, so it’s kind of thick and soft and cushiony. For lack of better term. And it goes in the microwave for 20 seconds and it warms up and you can kind of feel the humidity coming off of it. So, she’ll close her eyes and put this on over her eyes for a couple of minutes at a time. And it. Helps alleviate the dry eye. She doesn’t use this every day or anything like that, but when her eyes are extremely dry, she will use the dry eye compress.

[00:05:28] Um, this is something I purchased for her and she is a little reluctant to use it in the office, so I’m encouraging her to bring it home and maybe utilize it at home. However, the instructions indicate utilizing it in the morning is best, and what it is a circadian light therapy lamp. What this light does is it mimics the sun, mimics the outdoors, and it’s supposed to help wake you up and adjust that circadian rhythm within your body and reduce the time it takes to fatigue. They do not recommend using a circadian light in the evening because this light is what triggers your body in it’s time to wake up and start your day. That’s why the morning use is recommended. I’m hoping. She gives it a shot and or if she doesn’t, I’m going to bring it to my office and utilize it and see how it makes me feel. Hoping to encourage her to give it a shot. And the one reason she doesn’t like it is it’s a little big. Maybe I should have. Purchased a smaller one for her. She didn’t want this thing, this big lamp on her desk. And not that it’s massive, but when it folds open to expose the bulbs to you, it is a little tall. I can see her point. It’s going to cause people to ask questions at work and, and that’s something she tries to avoid at the present.

[00:07:06] And one of the last items that made this list is a hydration pack. You don’t have to get a big pack; you don’t have to get a big bladder. You can get a small hydration pack that holds a liter of water and the tube comes up and over your shoulder. So, you just have to reach across your body and utilize the one-way valve to draw water from the pack into your mouth to help stay hydrated. Now when we go for hikes, we obviously used them. Um, we have bladders up to three liters. However, if we’re going to the swap meet or something like that, you have a little bag on your back where you can keep money and ID and things of that nature, in addition to always having some water with you, and I think we’ve mentioned before in an episode that when we’re hiking. You know, sometimes you kick a rock, or you stumble a little bit because it’s uneven terrain. So, we came up with this little game. “If you’re tripping, you’re sipping”. So, every time I kick a rock, she kicks a rock. We stumble a little bit. We say that out loud, and we both take sips. And that little game helps us both stay hydrated throughout the course of the hike.

[00:08:20] These five items, and I’ll recap again, a humidifier or humidifiers, plural. weighted blanket, dry eye compress, circadian light therapy lamp, and a hydration pack.

[00:08:35] These are five things, um, with the exception of the lamp that, that we’ve purchased recently within the last six months, and we’ve deployed them in everyday living and they have helped again, the circadian light, the jury’s still out on that item. However. I’m going to take it back and utilize it and be able to speak on behalf of it.

[00:08:57] My daughter actually uses one and swears by it, and I’ve done a lot of reading on them before I purchased and it sounds like an awesome item, so hopefully we’ll get a little more info on that.

[00:09:10] And on that note, if anybody out there that’s listening is using a circadian light therapy lamp, let us know. Hit the comments on this post or shoot us a DM or message on social media and help me encourage her to deploy this lamp at work. If you found favor, if you haven’t found favor, let us know as well. We’re not getting paid by any of these products. That’s not why we’re doing this episode. These are things that we’ve purchased for our own benefit, so we wanted to share them with you.

[00:09:42] What I did do is compile a list of links, and what it is a search link on amazon.com so when you click on it, it’s going to return the searches. If you were to type, for example, hydration pack into Amazon search, this is what came up. Um, multiple colors, multiple manufacturers. We love. Osprey bladders. The majority of our packs are Osprey. However, Lupe does have a Camelback pack as well, and when it comes down to it, if you’re walking around town or you know, just doing local hikes, the quality of the pack doesn’t weigh into it much. You’re not going to abuse it much. However. If you’re going out for multiple days, then yes, I would encourage you to buy a pack, a higher end pack that’s going to be able to withstand the abuses of the outdoors.

[00:10:38] So there will be links to these five items in the show notes to this episode, and if you’re looking for them, you can go to Sjogren’s strong.com and all the podcast episodes are there, and at the bottom of each episode there are links to things that we’ve discussed throughout, and there’s also a comment form.

[00:11:00] Feel free to leave us a comment. Tell us a, you hate us, or you love us, or like us. We read all the comments, we do our best to give back to all of them and we’d love to hear what you think.

[00:11:13] We would also encourage you to give Sjogren strung a call at area code (714) 643-2500 x 415 and Sjogren’s strong is that extension (415) you can leave us a message. This is a voice mailbox. Only your message. Or question will be emailed to us and we’ll be able to listen to it. By doing so, you’re giving us permission to utilize your comment or question on a show. Not. Everybody will be included in shows. However, if it’s applicable to what we’re discussing or something we want to comment on, we will utilize your comment or question and your voice on the episode.

[00:11:56] In addition to that, we would like to remind you that we have started Chronically Active and that is a meetup group for those living in the Southern California area. Our meetups will most likely be between Orange County, LA County, Riverside, and San Bernardino, possibly San Diego, at some point. We’re obviously going to stick local just due to the fact that we’re here, but chronically active on meetup.com check it out and if you’d like to come hang out, go on a walk with us, we would love to have you there.

[00:12:35] In addition to that, I’d like to remind everybody that the Sjogren’s syndrome foundation is starting the “Spouses and Partners” group and what this is, it’s going to be a telephonic support group for those spouses and partners of somebody with Sjogren’s syndrome, so we can encourage each other and help each other out through supporting our loved one with Sjogren’s. And to get involved in that, you need to call the foundation at area code (301) 530-4420 extension 203 or email the foundation at SSF at Sjogren’s dot org

[00:13:15] Again, the numbers and the links will be in the show notes below. So, if you’re driving, don’t worry about it. Hit the show notes and you’ll be able to find all of this information.

[00:13:24] With all of that, having been said, I’m going to wrap this episode and wish Lupe, a speedy return. Sorry, you guys had to put up with just me minus the little message in the beginning with her on the phone from Guadalajara.

[00:13:37] Until next time, sip constantly and stay hydrated.

Links

Sjogren’s Syndrom Foundation “Spouses & Partners”
Call 1 (301) 530-4420 Ext. 203 or send an email to ssf@sjogrens.org
Should soon be listed – https://www.sjogrens.org/home/get-connected/support-groups/specialsupportgroups

Chronically Active MeetUp https://www.meetup.com/Chronically-Active/
Chronically Active on Sjogren’s Strong https://sjogrensstrong.com/chronically-active/

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Items discussed in this episode:

Humidifier
https://www.amazon.com/s?k=humidifiers&s=price-asc-rank&crid=790X8ONK1YDC&qid=1575319377&sprefix=humid%2Caps%2C187&ref=sr_st_price-asc-rank

Weighted Blanket
https://www.amazon.com/s?k=weighted+blanket&ref=nb_sb_noss_2

Dry Eye Compress
https://www.amazon.com/s?k=dry+eye+compress&crid=28SFRF7VTCK06&sprefix=Drty+eye+c%2Caps%2C187&ref=nb_sb_ss_sc_1_10

Circadian light therapy lamp
https://www.amazon.com/s?k=circadian+light+therapy+lamp&crid=3PU8OMP8113B2&sprefix=Circadian+light%2Caps%2C178&ref=nb_sb_ss_i_3_15

Hydration Pack
https://www.amazon.com/s?k=hydration+pack&ref=nb_sb_noss_1

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