Sjogren's Strong

Introduction

Sjogren’s Syndrome & Dry Eyes

About Sjogren’s Syndrome and Dry Eyes. Some tips and tricks to help keep that moisture where you most need it. And Yes, we have a few questions!

Sjogren’s Syndrome & Dry Eyes

Sjogren’s Syndrome & Dry Eyes

Brian & Lupe:     Welcome to another episode of Sjogren’s Strong.

Lupe:     My name is Lupe.

Brian:    And I’m Brian.

Lupe:     And today we’re gonna be discussing Dry Eyes.

Brian:    But before we get to dry eyes, we want to thank everybody who has allowed us to interview them. We have aired two of those episodes, to date. We have a couple more that are still in the editing file folder and we will be getting to those.

Brian:    But coming off of a long, extended weekend with Thanksgiving, having just taken place, we wanted to pull one of the duo shows out that we’ve been discussing doing. So that’s what you’re going to get today. And today we’re going to be talking about dry eyes.

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Lupe:     But before we get to that, I wanted to take this opportunity to thank everybody who has sent private messages. Um, they really warm our hearts. Especially mine, I think because, you know, at first I didn’t know if I wanted to put myself out there. But with your comments and… You guys are really inspiring me. I don’t know how to put it in words, but I really appreciate it.

Brian:    The private messages that have come across, have really given us the fuel to keep going. And it lets us know we’re moving in a direction that is positive. And we feel, having read those, we’re interpreting them as if we’re making that positive influence that we wanted to accomplish with this show.

Brian:    So you know who you are. If you’re listening to this – THANK YOU! I hope that puts a smile on your face, truly. We’re really grateful to, uh, read the comments and Lupe shares them with me if she gets them. And if I happen to get to them first, I make sure that she sees them, as well. But thank you from the bottom of our hearts. We really do appreciate it

Lupe:     And it’s not only private messages it’s also really nice comments. So thank you, everybody, for that. We really appreciate it.

Brian:    Yes, thank you.

Brian:    So, onto dry eyes; With Sjogren’s Syndrome, dry eyes are caused by damage exocrine glands. And that’s our immune system attacking those glands and not allowing them to produce as much moisture as they would if they were whole. So with these damaged glands and the lack of tear production on our own, there’s, ah, quite a few treatments on the market and we can speak to the ones that Lupe have tried. We’re going to briefly discuss and hopefully get some feedback from you if you’ve tried them. Just your insight on them as well. But these treatments, that Lupe tried, she went on Restasis pretty much right away, wasn’t it?

Lupe:     Yes. I did go on Restasis. One of the side effects is your eyes burning and I did feel my eyes burning for quite some time. It took a while but now I don’t feel the burning. But um, yeah, that, that is one of the side effects. But I don’t feel it anymore. And what I do is I keep my Restasis in the fridge. So when I put them in my eyes first thing in the morning, they’re really refreshing.

Brian:    And how many times a day do you take your Restasis?

Lupe:     Twice a day. One in the morning and one before bedtime.

Brian:    One thing that she started doing and I think it has to do with more of our activities, being outdoors and in the dirt and wind and desert and sun.

Lupe:     If I feel that I need eyedrops, I don’t want to use Restasis, but I do…Um, I’ve tried different brands and the ones that work best for me is Systane, and that’s S Y S T A N E. And I like the ones that come in individual vials because they are preservative free. And the ones that come, what is it… The little dropper that have multiple. Um, those… what the doc told me was that eventually they’ll leave, like a ring in your eye. Like when you boil water or… So that’s why I liked the individual vials.

Brian:    Yeah. And it’s recommended that you use preservative free eye drops. However, to each their own. What works for Lupe might not work for you. And again, before you switched change, add anything to your regiment, you know, consult your doc. They have a much better understanding than us of the chemistry of these products and how they’re going to affect not just you and your body, but your body with your diagnosis since you’ve established that relationship with them.

Brian:    Another cool thing here is, docs are constantly getting samples. So if there is something new on the market, ask them if they have a sample of it. Ask them what samples they do have. Again, talk to your doc, but make sure you’re not trying multiple products at the same time. So give your eyes, ah, some time to dry out or the one medication that you’re on now to leave your system before you start with something new so you can get a true impact.

Brian:    And a lot of the preservative-free products from our research do take a few days, if not longer, to take effect. To feel the full benefit of it. Restasis again is that way. You might need a little bit of it, but if you can get samples from the doc, you might save a little money and find a product that works better than what you’re currently taking now.

Lupe:     And like Ms. Dianne Sanders said: “try it and seasons”. So, three months… Try one thing and if that doesn’t work, you know, the next three months, try something else.

Brian:    Right. Right. Punctal plugs… so what a punctal plug is… Is a little plug that stops drainage of tears being produced to drain back into your sinuses, allowing your body to keep more of the moisture that is being produced in and around your eye.

Lupe:     I’ve read about ’em and so I did ask the doctor about them, but he said my eyes weren’t there yet. So no, I haven’t tried them.

Brian:    When it comes to that, it’s kind of weird to me. I feel like I would feel it. I’m sure I would get used to it after time, but it seems, for me personally, I don’t know if I would… I would dig it.

Lupe:     I don’t think I would try punctal plugs that, but that’s me personally.

Brian:    Do you know anybody with punctal plugs?

Lupe:     I do not, no.

Brian:    So for any of our listeners, if you have or used or thought about utilizing punctal plugs, let us know. Hit us, ah, hit us up on Facebook and let us know what your experience was. Did they work? Did they not work? How long did the procedure take? Um, give us the 411 about punctal plugs. Uh, we would appreciate it. And again, we’ll make sure we share what we learned from you with the listeners. I think one of the biggest things Lupe’s done for eye protection are glasses.

Lupe:     I’ve tried several different kinds of glasses, including sunglasses. Because we’re outdoors a lot, I like the bigger glasses, but I also like the ones that have the foam around the inside because they protect you from dirt, dust, wind.

Brian:    These glasses with the foam seals are more common in a sports goggle, but they will limit your peripheral vision a little bit. But it also stops wind from either wrapping around your back of your head or your glasses and, um, you know, getting in between your glasses in the eyes. If you’re outside hiking like we are sometimes the winds that are side, it can be an issue.

Lupe:     And the glasses do get foggy. So it does maintain moisture in your eyes. So it does what… they do work.

Brian:    Yeah. Yeah. And some have air vents, some work better than others. We’ve tried a few different brands but she recently just bought a big – look at me, I’m a movie star style sunglass, right?

Lupe:     I totally did. Because… Not because I like the attention. Well, part of me, a little bit does. But no, not because I like it. But because the doctor told… me last time that I went to get my eyes checked – that he asked me if I spend a lot of time outdoors. And I said yes I do. And he said, well you need to wear glasses. And I said I do. And he said you need to buy bigger glasses because he noticed a brown spots in my eyes. So I bought some movie star glasses because you know, I’m an L.A., almost.

Brian:    You know, it’s weird… some mornings, especially when the Santa Ana winds blow, we live in an area where the wind event are called Santa Ana’s. And wind is blowing off of the desert, up and over the mountains and pretty much right into the back of our house. And it’s a warm wind. The winds are really gusty and things tend to dry out.

Brian:    And on that we have dogs, so the backslider is always opened. At least you know that foot and a half so the dogs can come and go through the dog door. When this occurs, some mornings I wake up in my eyes are dry and crusty and I… I’m like, oh my goodness… I can only imagine what she’s feeling.

Lupe:     So I have a funny story for you guys. This was last week, right? It was the week before, it was really windy. The Santa Ana’s were blowing, tree’s got uprooted and my coworkers, they start complaining about, oh my God, my eyes are so dry and my skin, it’s so dry. And I did look at them like, are you serious? You know, but I don’t take the time to tell them, you know, I have dry eyes or whatnot because whatever, it doesn’t matter, but imagine if they’re feeling like that. Exactly. So

Brian:    One thing that we’ve done to help with this, especially during a Santa Ana wind event… to give you an example, if you’re not from southern California, if you saw any of the news footage of the wind’s whipping during the Woolsey Fire that just occurred in Malibu, that’s the same wind event that we’re talking about that happened last week.

Brian:    So the winds are really bad. But one thing that when it does get windy or the humidity is extremely low, we have three humidifiers in the house and we actually have a diffuser that does put some moisture into the air. Not as much as a humidifier does. We use are our essential oils in the diffuser. Running those humidifiers changes obviously the humidity level in the house, but you can feel it. You can feel the difference with that moisture in the house.

Brian:    On occasion when it’s been really bad, I’ll actually run a big pot of boiling water on the stove and the downside is it’s a hot wind, so it’s typically warm when the Santa Ana’s are blowing and I’m running a burner on the stove to vaporize water boiling, but those things can help.

Brian:    So we have a humidifier in the living room, one in the bedroom and one’s kind of a floater. So if we’re going to be hanging out in the living room for a few hours, we’ll take it in there. Uh, we typically never run to in the bedroom, but…

Lupe:     Nah, just one if we’re in the bedroom one and one in the living room.

Brian:    And if we’re going to spend time in the office, we might drag one in here.

Lupe:     And also for you guys that have trouble sleeping, a humidifier has made a world of difference for me. Puts moisture in the air, but it helps me sleep. It helps me wake up rested. And I’ve been wanting to tell you guys that. but I keep forgetting. So now that we’re talking about humidifiers, I wanted to bring that up. It helps me sleep. So if you guys don’t have one, I encourage you to go buy one.

Brian:    And again, this is going to be my opinion in Lupe’s looking at me like, here we go, but I feel since she started implementing fish oil into her vitamin regime, that the complaints of dryness in her eyes and skin have decreased. But that’s my perception.

Lupe:     Maybe I’m not complaining. I got tired of complaining.

Brian:    She never gets tired of that.

Lupe:     Yes, it’s true. Again, I take gummies, Omega three, two gummies in the morning and sometimes two to gummies for dinner.

Brian:    And if you go back and listen to Dr, Wong’s episode, she was our first interview. She actually referenced the use of Omega Three fish oils for dryness. And I’ve read a little bit about it on the Sjogren’s Syndrome Foundation’s website, as well. There are studies, they’ve been small, they’re not… they’re not large scale and/ or complete to my knowledge, but it would obviously make sense.

Brian:    We actually add a little bit of olive oil to the dog’s food during the summer months, uh, just to help their skin stay moist. So you know, it makes sense in my mind, but again, who am I? I’m not the doc.

Lupe:     Sounds good though. So it must be true.

Brian:    And one thing common with Sjogren’s is, and I’m probably going to butcher this, but Blepharitis and that is a condition where your eyes are so dry that these glands get blocked underneath your eyelids and it dries up and can cause swelling and discomfort, as well. Red eyes, whole nine yards and it’s actually a separate issue that needs to be treated. This is something we haven’t experienced.

Lupe:     No. Sometimes I feel like my eyes are little bit swollen, but no, I don’t think anything like this. No.

Brian:    So, if anybody out there has used punctal plugs or has been diagnosed and had to deal with the Blepharitis, we would really like to hear from you, just so we can educate ourselves more and relay that information on in a future episode. So if somebody is feeling that itch from their eye they kind of have an understanding and can at least steer their doctor or healthcare provider in the right direction to come up with a diagnosis and treatment for that

Lupe:     Sometimes and I don’t know how to explain this, but sometimes my eyes itch a little bit, so I start rubbing them and then they start squeaking. Squeak, squeak, squeak. Has that ever happened to you guys? I don’t know how to explain it… Brian’s laughing. But it’s true. they’re so dry and they go, squeak, squeak, squeak.

Brian:    I’m laughing at the nonverbal communication here, the hand gestures and the big smile on her face.

Lupe:     Speaking of tears, I don’t know, I just wanted to say this. Sometimes I have trouble explaining to people that my eyes don’t produce tears. So they wonder, well, if you don’t produce tears, can you cry? Yes, I can cry if, Brian makes me cry. You know, if he hurts my feelings.

Brian:    I promise her, we can watch your “who killed who” tv shows in 10 minutes after this stops. But she just cries anyway.

Lupe:     Oh, that’s funny. Um, I don’t know how to explain to them that, I can cry, but how are my eyes dry? And they don’t produce tears if I can cry. They don’t, they don’t understand that.

Brian:    And Dr. Ryba would say just tease her, once a day and make her cry. So, if anybody has an answer, has inquired about that and we will during our next appointment… If my eyes are dry and I have a hard time producing tears, why I can still cry? Crying is two things… It’s crying, but tears are separate from crying, right?

Lupe:     But they still tear?

Brian:    But sometimes you can produce tears without crying.

Lupe:     Well, if you’re a good actor or actress and I’m not.

Brian:    Okay. So we’re going to talk to you the doc next appointment. But if anybody has breached this subject with theirs, share with us,

Lupe:     It is interesting, yeah.

Brian:    It will be. So stay tuned. Those answers and more.

Lupe:     And on the next show of Sjogren’s Strong, we’re going to have answers for you.

Brian:    Well, maybe not the next episode. We’ve got a couple of interviews.

Brian:    Alright. So I just double checked my list and I think I’m good. Is there anything else you wanted to talk about?

Lupe:     Actually, yes. I wanted to talk about makeup. I find that I have to replace my makeup every three to four months because I noticed that my eyes start getting irritated or itchy or they start tearing up, throughout the day. And I wipe my makeup off and it helps. So, I don’t know if it’s the eyeliner and mascara, whatever. I replace everything. Powder, blush… I replaced everything. So that’s helped me. I don’t know if you might… You guys might have the same issue, but um, I just want to bring that up.

Brian:    And there’s a process we go through anytime there’s a change in our bodies, including me. To where I have a new complaint… For example, if I eat a lot of peanuts, I’ve never been diagnosed with an allergy, but if I consume a lot of peanut butter and peanuts, my left elbow just above the forum, say in between the forearm and the elbow will itch. Just, it’s an isolated spot and it itches like crazy.

Brian:    I come up with what have I been consuming in greater quantity than normal or new in my diet. And I start ruling things out and I’ll go without things for a couple of days and I’ve identified, I’m guessing it would, could be classified as an allergy to peanuts. It seems to be just peanuts. I can consume almonds, cashews, other nuts and I’m cool, but if I consume too much peanut or peanut-based product, then that area on my arm will itch and it’s, it’s like insane itch.

Brian:    Anytime we feel a sign or a symptom, we go through this process of what could it be, what changed in my life if we changed detergents, soaps in the bathroom, hand soap in the kitchen, dish soap, um, and, and we try to figure out is there a change or what have I been doing more lately than normal? And then we remove that from our life for a little while and see how it affects.

Brian:    And I don’t know, maybe it’s just the old school mentality in me to where I’m not the type to call the doctor, run to the doctor for every little thing. I try to figure in rule out what it could be. Obviously, as long as it’s not life-threatening. If my throat was itching and you know, I felt like it was closing up. I was having a hard time breathing. Yeah, I’d be calling 911, but just my arm itching and that’s one prime example that I can speak of personally. And we did the same thing with her makeup so her eyes were puffy, red, inflamed, and we decided that it might be the makeup. So let’s throw everything away, go replace it and see what happens. And it worked.

Lupe:     And also I’m glad that you brought up detergent because I did become allergic to a certain detergent that we were using. I don’t know if you remember, used to buy the powder detergent from Costco because it was cheaper. And then my eye, because I sleep on my side, I don’t know what side. But anyways, one of my eyes got really swollen?

Brian:    You don’t know what side I sleep on?

Lupe:     It got really bad. My eye was closed… just swollen shut. And I went to the doctor and he says, throw away or detergent and wash your sheets. And low and behold, it was a detergent. So you become allergic to things.

Brian:    Yeah, the body changes over time and I’ve never had an issue with peanuts before and she’s never had an issue with this detergent before. But making those subtle changes might, you know, save you time away from work. Time, sitting in a doctor’s office waiting for your doctor and then them to tell you, wash your sheets, buy a new detergent.

Brian:    Thanks doc. How much is that?

Lupe:     All right. How did you know? I hadn’t watched him in six months. I’m kidding. I watch him every week. Alright. I watch him every two weeks,

Brian:    But I also, again, just wanted to thank everybody for the kind words and comments and likes and follows. And thank you so much. I really appreciate that. It does. It does warm my heart. I’m really grateful. Thank you so much.

Lupe:     We encourage everyone to join Living Sjogren’s Strong on Facebook. It’s a private group where we can discuss topics like these. What has worked for you may just work for others. And we can all learn and encourage each other.

Lupe:     Keep in mind this is a place to ask questions and share experiences that have helped you and may benefit everyone.

Lupe:     Till next time. SIP CONSTANTLY AND STAY HYDRATED.

Links

Sjogren’s Strong Facebook Page https://www.facebook.com/SjogrensStrong/

Living Sjogren’s Strong Facebook Group https://www.facebook.com/groups/LivingSjogrensStrong/

Sjogren's Syndrome and Dry Eyes

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