Lupe and Brian talk about brain Fog, It comes it goes. The feeling of not being able to communicate with confidence in today’s topic.
Lupe & Brian: [00:00:00] Welcome to another episode of Sjogren’s Strong.[00:00:06] Brian: [00:00:06] This is Brian. [00:00:07] Lupe: [00:00:07] And this is Lupe. [00:00:08] Brian: [00:00:08] And this is your bi-monthly, got it right podcast, discussing how to live an active and healthy lifestyle despite a diagnosis of Sjogren’s Syndrome. [00:00:18] Lupe: [00:00:18] You know, I feel like we haven’t recorded in a while. [00:00:22] Brian: [00:00:22] You know, it’s weird doing every other week. [00:00:24] Lupe: [00:00:24] Yeah. I don’t know if I’m going to get used to it. [00:00:27] Brian: [00:00:27] Yeah. It’s, it’s a little strange. I have to look at the calendar go, are we recording this week or next week or what’s up? [00:00:34] Lupe: [00:00:34] Yeah, I’m a little bit off. Anyways. Hi everybody. Hope you guys are doing great. [00:00:38] Do you miss us being a weekly show or is every other week, you know, on par with the time you have to consume Sjogren Strong? [00:00:47] Can you chime in and let us know because, I don’t know, part of me wants to start doing it weekly again, but I don’t know if that’s what you guys want. We’ve had a few people say that they miss us and then a few people say that they like every other week, so, but yeah, let us know. [00:01:04] Brian: [00:01:04] Yeah, chime in. Let us know what you think. Maybe we’ll come back weekly. Maybe we’ll keep it, uh, every other. [00:01:12] Lupe: [00:01:12] I kind of miss it. [00:01:13] Brian: [00:01:13] Do you. [00:01:14] Lupe: [00:01:14] Yeah, I miss my peeps and I miss it. I do. [00:01:17] Brian: [00:01:17] Well, you’re still, you know, engaging on social. [00:01:19] Lupe: [00:01:19] I know, but it’s not the same cause I’m not talking. [00:01:21] Brian: [00:01:21] And on that note, if you follow us on Facebook, hit us up on Instagram and if you’re following us on Instagram, hit us up on Twitter. We’re on all three, TikTok coming soon. [00:01:30] Lupe: [00:01:30] I mean, you know, we created a TikTok account, but that means live videos and ahh, I don’t know. [00:01:38] Brian: [00:01:38] You know, we should do a video on brain fog. [00:01:40] Lupe: [00:01:40] Don’t be suspicious, don’t be suspicious. [00:01:44] Brian: [00:01:44] Some of you know that few weeks back Lupe had a bout with brain fog. And to be honest with you of all of the symptoms that she has, brain fog is the one that concerns me the most. [00:02:01] And I think it concerns me more for her mental wellbeing, than anything else? Because leg pain, you can deal with, you know, rest, elevate, heat, cold, shiatsu massage. [00:02:18] Lupe: [00:02:18] No shiatsu for me. [00:02:19] Brian: [00:02:19] You know, and the dehydration, we can hydrate. We can add electrolytes. Um, it’s easy, I don’t want to say it’s easy to bounce back or come back because I’m not the one feeling the deficit, but when she’s suffering with brain fog, I can tell. And I can tell it really bums her out. [00:02:38] And today’s episode, we want to talk a little bit about brain fog. Now again, as earlier said, we are not docs. This is our own experience. We are diving in and learning as much as we can, Lupe is going to talk about her experience, what she felt, what she thought, what she just went through. [00:02:57] I have the foundation’s patient education sheet on brain fog pulled up and I just purchased the audio book for me, entitled the Memory Bible by Gary Small, MD. And I purchased the Kindle version for Lupe o the very same book, um, of the very same book. [00:03:20] So she’s going to be reading through it. I’m going to be listening to it while I drive, and we’re probably going to do another episode talking about some of this stuff. [00:03:29] What I think this book is going to talk about is some of the thing’s Dr Ryba discussed with us many years back. And uh, you know, we’ll talk about some of those, as well. This is where the information is coming from. There will be a link to this one sheet, the patient education sheet from the Sjogren’s Syndrome Foundation in the show notes below and on it, it has referenced to the Memory Bible book, and that is why we purchased it. So, Lupe talk to us. [00:03:52] Lupe: [00:03:52] Well, first of all, thank you for getting me that book. I already downloaded it. I don’t have my Kindle right now, but my Kindle app. [00:04:01] Before I was diagnosed with Sjogren’s, I did notice a lot of brain fog and I thought it was early signs of Alzheimer’s and I did purchase a couple of books. And I can neither confirm nor deny that this is one of them, but ah thank you. Even if I do have it, um, I didn’t have the Kindle version, so I can take it with me everywhere. [00:04:18] Brian: [00:04:18] Either on the app or on your Kindle? [00:04:19] Lupe: [00:04:19] Yeah, so recently, maybe not last week. Last week it was getting better, but, uh, I’ve noticed that I had been struggling a lot at work. Uh, I’ve been trying to deal with it, but, uh, I kind of just broke down. [00:04:37] I came into Brian’s office one night and I think he had a guest, and I came to talk to him, I didn’t know that he had a guest. So, I was kind of bummed out that I had to wait until the guests left. [00:04:51] So when they left, I just broke down, crying like a little girl. And I told him, I’m, I’m struggling a lot. I don’t know what’s happening. I could deal with brain fog. I mean, I could deal with pain and cold and muscle aches and all that, you know, crap. But I can’t deal with brain fog because it’s affecting me. It’s affecting my, my mental wellbeing. It’s affecting me at work. And I kind of thought, you know, what’s causing it? [00:05:21] Brian: [00:05:21] You know? So, like we’ve said in the past, we do our best to keep really good logs. What’s changed? What’s different? And, and the one thing that did change was diet. And the two things within diet that had changed dramatically was she added meat back into her diet, attempting to consume more protein that way versus, you know, the lagoons and beans and dark veggies. And she was on this binge of sugar. [00:05:54] Lupe: [00:05:54] Oh, I was craving, you know what I was craving not, it wasn’t even Starbucks from Starbucks. It was the Frappuccino that you get in the little bottle from retail stores. Donuts and fraps. [00:06:04] Brian: [00:06:04] Chocolate glazed donuts. [00:06:07] Lupe: [00:06:07] Yes. [00:06:08] Brian: [00:06:08] She would say, hey, you sandwich? Cause we work close enough to where she can walk to my building. I meet her out front, we walk up to this little deli and I’m like, sure. So, we go up there and then she just passes the sandwich shop and went to the donut shop. And I’m like, well, I’m going to get a sandwich, I need food, I need protein. And we sit out front and I would have a sandwich and she would have her Frap and donut. That bothers me a little bit because I know she’s going to pay for it later. [00:06:35] Lupe: [00:06:35] Well, I don’t know if you guys notice, but when you’re doing something, you know you’re not supposed to do, like eat something that you’re not supposed to eat. Like for me, my crack, you guys know is ice cream, right? Just recently it was this chocolate doughnut thing. I don’t know what it is. [00:06:51] I think I’m going through the change; guys and I’m having these weird cravings. Okay. So, for me, it’s ice cream. Yesterday I had a little scoop of ice cream and my scoops are really big. Okay. So anyways, I had a little scoop of ice cream yesterday, but that’s okay. It’s just a small scoop. [00:07:06] And then the day before that, I had a donut, but it’s okay. It was just one donut. Right? And, I was eating healthy otherwise. And then, you know, in a couple of days I had another donut and you know, so on and so forth. And because you think to yourself, well, it’s just one donut. What’s just one scoop of ice cream? [00:07:25] But you don’t feel the effects right away. They just kind of buildup in your body, right? Next thing you know, without a warning, all your symptoms just creep up on you. And I was struggling so much to the point guys that, my job is really easy. There’s really nothing to be stressed about. It is so easy. [00:07:47] It’s just a lot of it, you know? And it does get stressful because they hit you with a lot of orders, or you have to, you know, stuff changes. This is hot, this is not changing the dates, blah, blah, blah. You know? Um, but other than that, it’s not that hard. [00:08:02] But I was struggling because let’s say for example, an order said they’re ordering 552 of something, well, instead of typing 552, I would type, I don’t know, maybe 522 or, you know, I will transpose some numbers. [00:08:20] And I check my stuff a lot. I check it before I hit save. When I print it, I check it and I check it, check, a check it. I check it a million times. Okay. Recently, especially when I’m going through brain fog and I was missing some stuff, I was transposing numbers and I’m like, how did I transpose a number? I checked it 10 times. [00:08:42] But my eyes are seeing one thing. My brain is seeing another thing, and I don’t know how to explain it. It’s just, they’re not talking to each other, right? And I didn’t catch my mistake until the following day. Well, sometimes the following day it’s too late, right? Because some stuff needs to be, it’s live. You have to, it’s, it’s moving like today [00:09:06] And I’m like, oh geez, I’m really going to get fired. That’s what I’ve been going through. And I don’t think it’s just that work. Obviously, work is what concerns me, obviously. Cause at home, who cares? Right? I could talk to Brian and sign language or change words around or whatever and he’ll understand me. [00:09:26] But, um, yeah, that’s what I’d be going through. And again, it was the chicken and the sugar, and I think it was a combination of both. So, what did I do? [00:09:36] Oh guys. And I was also having a lot of inflammation in my fingers. I’ve posted pictures before of my fingers and I was getting, having a lot of inflammation. [00:09:45] When I noticed the brain fog, I cut the chicken cold turkey. Uh, the donut here and there, right? But the inflammation on my fingers has gone down so much. [00:09:57] Brian: [00:09:57] You know, we’re doing research and we’re trying to figure out if there’s a correlation between diet and the brain fog. And this is the third or fourth time recently in the last, you know, year or so to where an increase in sugar has affected her adversely when it comes to mental acuity. [00:10:15] And you know, it’s funny because we realize this, we cut sugar out, life gets better, we move on. A few months down the road, it’s going to be, oh, I really want a, you know, in insert sweet treat here and. [00:10:33] Lupe: [00:10:33] Why? Because I’m feeling better. [00:10:36] Brian: [00:10:36] Right? [00:10:36] Lupe: [00:10:36] What’s it going to hurt? [00:10:37] Brian: [00:10:37] Right? Right. So, you know, that occurs. And then, oh, just one, I feel fine. Let me have something else and let me have something else. And then two or three weeks into it, we’re back to where we were. [00:10:48] Now the chicken and the protein, was that a factor or was it just the sugar? You know, we don’t know. We’re going to have to give it a few weeks and then maybe reintroduce the chicken without the sugar and see what comes of that. [00:11:01] But back to me having a hard time watching her go through this, because I can see the frustration. And I can see, she’ll look at me to say something and she’d, she can’t form the sentence. So, she chooses not to try. And, you know, I can see the, the anguish in that inner conflict that she’s struggling with because she wants to talk, she wants to communicate. Whether she can’t form the words, or she can, but she would rather not try. [00:11:30] So she doesn’t, you know, say the wrong thing and come off, you know, the, the, there’s that whole self-conscious aspect of it, as well. And again, it pains me the worst when I see her like this. So, you know, when I see it and when I notice it, I try not to ask questions or put her in a position where she needs to speak. [00:11:50] You know, maybe it’s time for a movie or let’s binge watch some TV, to where we can sit there in relative silence and she won’t have to struggle with it. You know, hindsight, that’s kind of counterproductive because back in the day when we discussed brain fog with Dr Ryba, it was, use your brain, use your brain, use your brain. [00:12:11] Go to school, take a class, read a book, do crossword puzzles, do Seduko, do puzzle puzzles. Utilize your brain. To figure things out and it will stay younger. Some of the research we did in that aspect. You know, again, if you don’t use it, you lose it, right? [00:12:32] So as the brain ages, these conductors inside of it, they kind of bunch up and they get tighter and they kind of misfire and our brains aging. Utilizing your brain keeps things sharp, keeps things moving down the correct paths that they’re supposed to. [00:12:49] So, we wanted to do this episode and, you know, I’m of the opinion that if one person has a question or is feeling something, there’s hundreds out there that do. So, we would really like to hear from you, what have you discovered about your own habits and brain fog? What have the conversations been like with your doctor in regard to brain fog and how to combat it? [00:13:15] Has anyone read the Memory Bible? Did you gain something from it? What you learned? Are you still utilizing today? Do you feel it’s helped you? I mean, there’s so many questions around this that we really want to open conversation and dialogue. [00:13:31] So, we’re going to obviously post this episode across social, and then right after we’re going to post an invite to. Join us in the Facebook group. And we really want to have an in-depth conversation. We want to do it in the group because the people that are there, you know, all say they have Sjogren’s and, or are supporting somebody with Sjogren’s. So, you know, it’s, it’s a little more intimate of a place than just the Facebook wall on Sjogren’s, uh on Sjogren’s Strong on Facebook. [00:14:01] Lupe: [00:14:01] You know, I noticed that a lot of people don’t really engage on the page because for me, for example, I’m going to take me, for example, sometimes I come across a really good post on Sjogren’s related, but you know, I follow several pages, but I don’t comment because then that appears on my wall and my friends and you know, everybody sees it and people. [00:14:25] It’s funny because I’m open with the world, right? But you guys don’t know me personally. But the people that I that know me personally, I don’t want them to know that I have shown ones because then that’s who I become, if that makes sense. And I think that’s why a lot of people don’t really interact on the page. [00:14:40] Brian: [00:14:40] Right. And that’s another reason we created this group, because if you post within the group, only people in the group are going to see it. So, we really want to have a conversation in regard to this. And again, we understand it’s all, you know, Monday morning quarterbacking because it’s talks you’ve had with your doctor. [00:15:01] And we have reached out to a medical professional to come in and discuss brain fog in a future upcoming episode. By the time we do that, we’re both going to have consumed this book. And, um, you know, done a few extra hours of research when it comes to brain fog. And, you know, there’s still so much unknown about the brain. More so now than decades in the past with all the imaging that can take place nowadays. [00:15:28] You know, again, this affecting Lupe and I see how it pains her and causes her to withdraw is the one thing that hurts me the most. And not that she’s hurting me or doing it intentionally, it pains me to see her go through these bouts of brain fog. [00:15:47] Lupe: [00:15:47] After I broke down, Brian, I mean, what can he do to help me, right? Just support me and be there and be there for me. [00:15:55] Brian: [00:15:55] We sat, we talked about what’s changed? Rule things out, changed behavior. [00:16:01] Lupe: [00:16:01] So, for me, guys, I keep telling, you know, people, new people, newly diagnosed that come to me and ask me, what can you do? My first thing, my very first thing that I always say, diet, it’s your diet. Change your diet, cut out sugar. You know, and do as I say, not as I do, right? Because obviously I’ve been consuming sugar lately. [00:16:24] I don’t know if sugar affects people the same way. And also, by the way, it also causes inflammation. That’s why when I stopped consuming it, my inflammation started going down right away. [00:16:34] But what did we do about it besides talking about it? Cut out sugar. I cut out meat. Really it was only, um, chicken. Within a couple of days, I started feeling better. Now, even now, I’m not 100% where my brain, I would like it to be, you know, cause I’m not quick-witted or I mean I used to be, but I am not that way anymore and it’s because of Sjogren’s. [00:17:01] So, going forward, I’m going to try to do what I can not to get that way again. Because it’s awful. You can’t even talk to your coworkers. So, what do we do? Diet. Sugar. We bought these books. I went to the, I always want to go, every time we’re out, I always want to go to, um, the bookstore, browse. We actually bought a little book of Sudoku. [00:17:25] Brian: [00:17:25] And you know, one thing we did when we were doing a lot of hiking and driving and photography, we would play, you know, the silly little games you play with your kids to keep them occupied in the car. You find a letter on a sign and you have to come up with a word and you have to do it in alphabetical order and, and all of that. [00:17:44] We would do things like that, and that was helpful. And then we went through a spell to where we were attempting to do a, uh, what’s it called? Improv style comedy back and forth through. It was always yes and, and we couldn’t say no. We couldn’t end the conversation. We had to keep conversation going, but it was like off the wall stuff. [00:18:09] You know, I saw dog on the freeway. Oh, I saw a dog on the freeway once and it was chasing a cat, and then she would chime in. You know, it was just things like that. But when we were doing it, things were better. [00:18:20] Lupe: [00:18:20] Yup. [00:18:20] Brian: [00:18:20] And that’s something due to the lack of driving, we haven’t had the opportunity, but you know, maybe we take 10 minutes in the evening and we play a word game like that to where the mind’s thinking. And you know, again, we’re, we’re kind of throwing it against the wall right now because of this recent bout. [00:18:40] And we’re asking you to jump in on the post within the group and let’s have a conversation. And we are reading this book and well I’m listening; she’s reading the book. We’re going to have a doctor on the show to talk specifically about brain fog. And you know, in a lot of the comments we’ve heard a lot of people talk about brain fog and discuss it before. [00:19:07] So, a, we’re hoping, obviously this episode is not helping anybody because we’re just like, what and why and what we’re doing about it, but let’s jump in. Let’s do it together. [00:19:18] Lupe: [00:19:18] Oh, I recently, actually, as recently, as last week I think, I went to the new rheumatologists that I’m seeing with my new insurance for the second time, and I’m not going to judge him based on that visit because he was sick with the flu and he should have been home, but you know, he was at work dealing with us. [00:19:42] You know, he listened, but he gave me the meds that I wanted, but I don’t think he was all there. So again, I’m not going to judge it based on that, but I bring him up because I did ask him, the reason why I made the appointment was because of my brain fog. It was so bad, you know, it was concerning me, but I couldn’t get in until maybe we can a half, two weeks later. [00:20:04] But I asked him, when you have inflammation, does your brain also get inflamed? You know, do you have inflammation on your brain also? And he said, no. [00:20:16] Brian: [00:20:16] And we’ve heard contrary to that as well. [00:20:18] Lupe: [00:20:18] We have, yes. [00:20:19] Brian: [00:20:19] Again, it’s easy to judge a doctor and say, ah, but a, he was off. Um, he wanted to get us out of the office so he could probably go lay down and sleep. [00:20:27] Lupe: [00:20:27] He probably doesn’t remember a thing we said. [00:20:30] Brian: [00:20:30] But it’s easy to come up with questions and nobody out there knows everything, especially about, such a complex issue as Sjogren’s. You know, we can’t judge him by the one visit, but again, we really want to have this conversation. [00:20:47] Lupe: [00:20:47] So what did I change in my diet besides sugar and protein? When I was eating only fruits throughout the day until dinner time, I felt really good and my inflammation went down. So, this week, that’s what I’m doing. [00:21:05] Brian: [00:21:05] And we know everyone’s going to say, Oh, fruits got a lot of sugar, but it’s natural sugar in the body processes differently than refined sugar. So, and she did do really good on it. [00:21:13] Lupe: [00:21:13] Like a cantaloupe, cucumbers, banana. [00:21:17] Brian: [00:21:17] Mango, pineapple, apple. [00:21:19] Lupe: [00:21:19] Thank you. So, I’m going to give that a try this week and we’ll see how I feel. And you know, we’ll update you in a couple of weeks. [00:21:28] But you know what the brain fog, as well, it not only affects your brain, right? It affects you mentally and physically. I know, I said that wrong, but, um, you get depressed. You don’t want to do anything. You know, we said, Oh, you know, this year we’re going to be active. We’re going to run a marathon, blah, blah, blah. [00:21:49] But we haven’t really done that. And I think we’re kind of feeding off of each other because with my brain fog, maybe Brian like, okay, I didn’t want to do it anyways, right? And we’re not kind of pushing each other. So, we’re not being as active as we used to be or want to be. [00:22:05] Because of my brain fog, I don’t want to do anything. I really just don’t. [00:22:09] Brian: [00:22:09] Obviously that needs to get changed. And you know, and again, it all starts with diet. [00:22:15] I honestly feel like we didn’t accomplish much with this episode except share what we’re going through and share some of what’s bothering us and is painful in our lives right now. [00:22:24] However, and please we’re not doing it for sympathy. We want constructive conversation. Not, oh, me too, me too poor you. Join us in the group. And let’s have a conversation and, um, you’re going to hear more about this subject from us the next few episodes as we dive into it. Learn, try new things. You know, nothing’s going to change overnight, we’re well aware of that. [00:22:45] Lupe: [00:22:45] Me, for example, I never want sympathy, right? But it does help me, that I know I’m not alone, that you guys are going through the same thing. But also, I want to do what I share my experience because I know many of you guys, don’t know somebody with Sjogren’s personally, and it helps, again, to know that you’re not alone. [00:23:07] You’re not going through, you know, you’re not going crazy because somebody else is going through the same thing. You know, maybe a little bit different, but we all go through the same thing. We all have ups and downs. And It affects our mental wellbeing. You know what? I’ve been throwing that word out a lot. [00:23:23] Mental wellbeing, mental illness, but because it affects it. You’re going through one thing and you have all these thoughts and maybe some are good thoughts, maybe some are bad thoughts. And you need to talk about it because depression is real. [00:23:40] Brian: [00:23:40] You know what it is, and I mean, I get anxious and I don’t want to say I get depressed, but I get bummed out. I get stressed out. You know, I’m a small business owner. Things happen in business and some weeks are good, some months are bad. You know, I need to stay and work an extra four hours. But there’s things going on outside of work that need attention, as well. [00:24:00] And I don’t want to say that we’re feeding off each other in that way, but I think having honest conversations with somebody you love about how you are doing mentally and what is bumming you out is healthy. [00:24:13] You know, it doesn’t hurt to talk. And we’re actually really excited, uh, to attend the Sjogren’s Support Group in Long Beach. I think it’s the South LA Orange County Chapter that Dodi runs. [00:24:27] We will link to it in the show as well, and it’s actually, she has a. Doctor coming in and she’s actually talking about mental health, so we’ll be able to report back on that one. But it’s not until April, I think. [00:24:38] Lupe: [00:24:38] No, it’s this month. [00:24:40] Brian: [00:24:40] Is it this month? [00:24:41] Lupe: [00:24:41] Probably at the end of the month. [00:24:42] Brian: [00:24:42] Okay. Awesome. Even better, we’ll be able to get back to you sooner, but I mean, brain fog, mental health, dealing with a chronic illness and mental health, it all plays into each other. So, we are going to have this conversation with ourselves, with you and talk about it and bring it up more as we continue. [00:25:00] So let’s get off that topic, let’s get onto some happy stuff. We attended Susan Barajas’ Sjogren’s Support Group. [00:25:07] And to that, I always say, whoop whoop, Susan Barajas!! Susan Barajas so awesome, she was very knowledgeable. And you know what is amazing that she hasn’t been diagnosed that long? Maybe she’s had it maybe four or five years. And, but she just dived into, just learning and she’s part of the foundation. And I just love her. She makes you feel less alone. [00:25:31] You know what? It’s an awesome group and this is the 3rd, 3rd time we’ve driven up? [00:25:35] Lupe: [00:25:35] I think so, yes? [00:25:36] Brian: [00:25:36] Um, and it’s not close to us, but we enjoy her groups. We enjoy the crowd, and we’re kind of getting to know others in the group, which is cool. Awesome, awesome group, that took place this weekend. [00:25:49] This coming weekend is the Chronically Active ride. We’re joining the CicLAvia in South LA. [00:25:56] Lupe: [00:25:56] Correct. [00:25:57] Brian: [00:25:57] So if anybody is in the Los Angeles, Orange County area and wants to come out and ride your bike on some streets that are shut down for us only, please join us. Uh, links are on the website there. We will be going to the patient conference in Arizona that’s coming up. [00:26:13] Lupe: [00:26:13] That’s in April. [00:26:15] Brian: [00:26:15] Yeah, that’s in April. [00:26:17] Some cool stuff on the pipeline. So, if you are going to go to the patient conference, let us know. We’d love to find time for everybody who listens to us and put a face to a name. [00:26:30] Lupe: [00:26:30] And if you’re planning on going, you need to go register because it fills up really quick. [00:26:36] Brian: [00:26:36] Yeah. I think they cap it like 600,500. [00:26:39] Lupe: [00:26:39] 500 [00:26:40] Brian: [00:26:40] 500, somewhere in there. [00:26:41] So yeah, go register, find the hotel room and come hang out. That will be cool. And I think that’s pretty much it for now. [00:26:51] Lupe: [00:26:51] I think that’s it. Really, I just want to, I just wanted to share how I had been feeling, lately. And because I just think it’s important to put it out there and let everybody know that we’re not alone. We’re going through this together. [00:27:04] Brian: [00:27:04] That we are. All right everybody, we appreciate you listening. [00:27:08] Lupe: [00:27:08] Until next time, sip constantly and stay hydrated.
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Call Us and Leave a message that may be played on an upcoming episode.
(714) 643-2500 x 415
Sjogren’s Syndrom Foundation “Spouses & Partners” on the 29th.
To register please call 1 (301) 530-4420 Ext. 203 or send an email to firstname.lastname@example.org