Susan Barajas joins us in the studio to talk about her journey and involvement with the Sjogren’s Syndrome Foundation.
Listen as she describes what running half marathons is like with Sjogren’s Syndrome.
Brian: Welcome Susan, and we’re going to get to learn more about you and your journey with Sjogren’s as we go on. How are you today?
Susan: I’m doing great and I’m excited to be here. It’s so nice to have a chance to talk with both of you. And all the other people out there listening.
Brian: So Susan, when were you diagnosed with Sjogren’s?
Susan: I was diagnosed a little over four years ago. And my journey to diagnosis was a lot easier than many peoples. I was very fortunate that I had hardly any symptoms at the time and thought, well maybe I’ll go see a rheumatologist or, well, should I see a primary care?
Susan: Um, but I didn’t have a primary care doctor, so I went and saw a rheumatologist and with some minor hand pain, I’d already had Raynaud’s for a while and decided, um, to see a rheumatologist. And he ran blood work and I popped up, uh, positive for the Sjogren’s antibodies. So my journey was just much simpler. I wasn’t hunting around for years for solutions.
Lupe: But you had symptoms for a long time, you just didn’t know why.
Susan: The symptoms that I had, primarily, were dry mouth and I hadn’t really recognized it as dry mouth. I just knew that when I was out in restaurants, I would have my water glass refilled at least three or four times during a meal. Um, and at home I would drink a lot of fluids, but I thought that’s what everybody did. Uh, my other Sjogren’s symptoms really weren’t that bad at the beginning. Over the last four years, they’ve worsened quite a bit though.
Brian: Now for our listeners that might not know what Raynaud’s is, could you explain that a little bit?
Susan: Raynaud’s is a condition that affects the circulation, primarily, in the fingers but also the toes, as well. And the characteristics are where your hands turn white and then blue and then maybe red, as the blood flow comes back into them. And what happens is, is that you’re very, very sensitive to heat and cold.
Susan: When I take something out of the freezer, I have a towel with me. I always drink a drink in a, in a cushy, one of those little foam things. Because the cold and the heat bothers me too much. I have a pair of gloves in my purse.
Lupe: Wow. Is that for when it’s cold or when you grab something cold?
Susan: The gloves can be when, um, it’s like, even in an air conditioned room and then all of a sudden my hands will start reacting to the air conditioning and they will start going more numb than they always are. A little bit know.
Brian: So is it a numbness? Is there any pain associated with it or just numbness?
Susan: For me it’s numbness. Um, my doctor thinks that it’s also, uh, neuropathy. So how much is neuropathy versus the Raynaud’s? I’m not really sure, but I am very sensitive to the heat and cold. Um, but I don’t let it stop me. I was, in Antarctica about a year and a half ago, wearing three pairs of gloves on my hands, so.
Susan: It’s not going to stop me.
Brian: Now, did you have hand warmers inside the gloves, as well.
Susan: I did. I did. Hand warmers foot warmers in my shoes. Yes.
Lupe: So you are very active.
Susan: I am.
Lupe: You’ve run a few marathons?
Susan: Half marathons. Yes.
Lupe: Half marathon.
Susan: Half marathon, 13.1.
Lupe: That’s quite a bit. Um, what do you do to prepare for that?
Susan: At this stage of my Sjogren’s life, I do have quite a bit of fatigue. So, people don’t understand how I’m able to run and do races. I’ve done, um, nine half marathons in the last four years and several 10k’s, which is the 6.2.
Susan: And so people who don’t have Sjogren’s say, well, I can’t run that race. So how can your Sjogren’s be that bad if you can be that active and run those races?
Susan: Well, I just do it through managing my activities. Um, my training runs, I don’t plan to do anything else that day. I don’t do errands that day, I don’t. I mean, I’ll cook, but I won’t plan to clean the house. I won’t plan, uh, doctor’s appointments on run days. And it’s just a matter of, uh, of scheduling. And knowing what my body can tolerate.
Lupe: Time management.
Brian: So when you’re preparing for a race, how many days a week are you running and what distances are you running, in preparation for say a 10k.
Susan: Preparation for a 10K, which I did about a week and a half ago, is probably nothing unusual than my regular running routine. My regular running routine is, in fact, usually five miles, minimum. And if I’m training for a race, maybe six to eight on a training run. A combination of run walking, but primarily primarily running.
Susan: So if I’m doing a 10K, 6 point, I don’t have to do anything other than the routine I described where I just, um, plan my days. I plan my days, which is what I do anyway. I only plan one significant thing for each day. If I have a doctor’s appointment, I don’t plan to run errands that day. And if I do errands, I don’t do anything else that day.
Brian: Just the mindset, and for me, someone not having Sjogren’s, is it the thrill of accomplishment? Is it the endorphins that kick when you’re running, that is your motivation for knowing the rest of this day, I’m doing nothing or as very little as possible.
Susan: One of the reasons that I run is the wristband that I’m wearing, that says “I Am Stronger Than My Sjogren’s, and it makes me feel very good that I’m able to do this. And then I’m able to do this accomplishment. Aside from the health aspects of being active, which of course is good and almost goes without saying. But running to me and being outside, I like to run outside, is the big difference.
Susan: It’s just it’s a big beautiful world out there and being outside and running, is not only for my physical health but it’s for my mental health, as well. There’s so many things that are not under our control with Sjogren’s, that I like to focus on the three things that are, to me, the three things.
Susan: One is what I eat, what I control, what goes into my mouth. Another is exercise, how much exercise you get and keeping your body as healthy as it can be. And then the third is having a positive attitude. And I feel like if I can keep a positive attitude if I can eat healthy and I can exercise, I’m doing a lot to show the Sjogren’s that I’m in charge. It is not in charge of me.
Lupe: How hard is it to have a positive mental attitude? A lot of people find it hard.
Susan: I totally understand that. I may have a leg up because I’ve always been a positive person, so it may be easier for me than it is for other people. Um, one of the things that helps me is I have Sjogren’s, but that’s not the center of my life. I have a life outside of Sjogren’s. And Sjogren’s, yes, it’s there, it’s a part of it. But I try to focus on what’s positive in my life. And even as far as the Sjogren’s goes, I can always find somebody who’s worse off than me. There are always people who are worse off and I’m not as bad as others. And that should make me feel good.
Brian: So after a run, are there any special things you do to help your body recover and not, just a scheduled event, but training. Have you found a routine that helps you recover more comfortably or faster or what would you say contributes to getting back to norm?
Susan: My norm? You mean, my Sjogren’s normal, right?
Brian: Your Sjogren’s normal.
Susan: My Sjogren’s normal. The only time where I have to do something special is when I am training for a race and I do what’s called a long run, where instead of running 5 to 7 miles, I’m running 10 miles, in training. And that really does take a lot out of me.
Susan: And I just plan to hit the shower and baby myself the rest of the day. I’ll just sit in the chair and watch TV and the main thing is when I do that, I don’t feel guilty about it.
Susan: Because I think a lot of Sjogren’s, people feel like when they’re inactive and they take that time for themselves, like, oh, I should be doing this, I should be doing that. No, I don’t feel guilty. I’ve accepted that this is the way it is, and I’m just going to sit there and watch some mindless or watch a movie or something.
Lupe: You’re doing what your body needs, what your body’s telling you to do.
Lupe: And how long after a run, how long does it take you to recover or do you just go back to regular?
Susan: For my training runs it, pretty much is regular, unless I’m doing a long run. If I’m doing a long race, if I do a half marathon, I have been doing a number of them out of town and a number of them with Team Sjogren’s, which we could talk about or now or later.
Susan: Um, but I’ve done races in um, oh gosh, with Team Sjogren’s, I just finished doing Philadelphia, but I’ve done Las Vegas. I’ve done Denver and New Orleans races, with them. And so that, you have the added complicating factor of recovering from the race and you’re recovering from travel. And I’ve done some in San Diego and Seattle, as well. And, but again, adding the travel element makes recovery harder. And I just planned that I’m going to be, probably, down for a couple of days.
Brian: So before we talk about Team Sjogren’s, we actually first heard your voice on a conference call planning the upcoming Los Angeles Area Walk For Sjogren’s. And I don’t know about a month ago or so we went up to one of your support groups that you run in the Inland Empire. I think it was Lupe’s favorite so far.
Lupe: So far I’ve only been to three but I Susan’s with my favorite definitely.
Susan: And I think it was the positivity.
Lupe: I took a lot away from it. You were very positive. Um, the other groups, the first one was positive, the second one. I didn’t walk away with such an awesome experience, for me. Um, so thank you. Thank you.
Susan: Well, thank you for that feedback. I really appreciate that. I want it to be a positive experience. One of the things that’s dear to my heart, in working in the Sjogren’s community, is I feel so sad that there are people who are alone out there, who don’t know anybody else with Sjogren’s. And how difficult that is. And how lonely and isolating that must be for them.
Susan: I can’t tell you how many people I’ve met who said, I’ve never talked to anybody else with Sjogren’s before. Whether it’s somebody who’s calls the foundation and they give them my number and I talk with them, they’re newly diagnosed. Or, um, I was on a, um, a week-long hiking trip and the Sierra Nevada’s and I have a Team Sjogren’s shirt. And this woman came up to me and said, oh, Sjogren’s, I have Sjogren’s. And I’ve never met anybody with Sjogren’s before.
Susan: I travel a lot and I was on a tour, I can’t remember where I was in some other country. And again, wearing my Team Sjogren’s shirt and someone coming up and, oh, my husband has Sjogren’s and I’ve never met anybody else with Sjogren’s. And it’s, um, how lonely that must be. Not to know anybody.
Susan: I think the support groups are great for finding people who know what it’s like when you say, how are you doing? And you say, I’m okay. We know what okay means. Okay means that you’re still tired and your eyes are bothering you. And some of the other symptoms. So, whether people find somebody that they can talk with, either at a support group or your Facebook page and your Sjogren’s Strong website and these podcasts. Smart Patients is another wonderful blog that people like very much. Um, somehow find somebody in your life that you can talk to about the disease.
Brian: And when we say your group’s been our favorite so far, not to take anything away from the other groups. A, a lot of it has to do with when you arrive, how are you feeling? Where are you at mentally? Are you being open-minded enough to absorb what’s being given? Um, that has a lot to do with, you know, anything in life, as well.
Brian: So, the very first support group we went to was actually in San Diego. And I walked away going, oh my gosh, that was so cool and I learned so much and I turned to Lupe and she’s crying. I’m like, whoa. And I’ve told that story before. But you know, everybody’s going to take something different away.
Brian: The point to this is, find a support group in your area, that you can attend and go there with the mentality of what can I take from what’s being talked about and who can I meet? There might be somebody that lives close. You like the same activities. There’s more to it than just what’s being given by who’s running the group. So walk into it with an open mind and do your best to look for something to take away that’s positive for you.
Susan: But I mentioned those other avenues, as well, because unfortunately, not everybody has support groups in their area. There’s only about 65 of the Sjogren’s, ones nationwide. And so for people who don’t have a support group in their area, what do they do?
Susan: Um, oh my gosh. Um, again, I think they can find people, maybe even who live in their area, just through some of the websites. You can kind of find out in the blog in the discussion trains, where people live sometimes. And then try to hook up with them that way.
Susan: I think I have more Sjogren’s friends, now, than non-Sjogren’s friends, truly across the country, but they’re across the country. And one of the other ways is because I’ve gotten involved with the Sjogren’s Foundation’s activities. Whether they’re conferences or um, the National Patient Conference or sometimes conferences in the area or in the Team Sjogren’s running group, um, just finding these people and they’re now really good friends.
Susan: We message each other. We know we have an important doctor and so we’ll message each other and say, so how did the appointment go today? What did they say? And so we have our own support system across thousands of miles.
Brian: That’s awesome. So with other travel that you do, what tips and tricks could you share with us for say, that airplane ride across the country with the stale filtered dry air and being such close proximity with other humans?
Susan: That’s an excellent question. Um, I do-do a lot of travel. I do about two international trips a year, plus a number of, uh, stateside travel. If I’m home for two months, it’s probably unusual. That’s my recovery period if I’m home for two months.
Susan: Um, airplane travel is a challenge. I do have eyewear through Ziena who is, um, they’ve become more involved with the Sjogren’s Foundation. Their moisture chamber glasses, where they have silicone inserts around the glasses, that help keep the dryness out of your eyes. That has been wonderful for me. I can now do a 10 hour international plane ride and not even use eyedrops. They’re just amazing. So that’s moisture, chamber glasses.
Susan: I always, of course, carry my water bottle with me. Um, I’m on a couple immunosuppressant drug and my white blood count and all, is very low.
Susan: I’m very susceptible to infections. So I do wear masks in airports and on the airplanes. And the advantage of that is people avoid you. Here I’m trying to avoid their germs, but they tend to, you know, when you’re sitting there in those benches, in the waiting rooms at the gate, they won’t sit next to you, because you have a mask on your face. It’s kind of funny.
Brian: I’m going to start trying that.
Lupe: Yeah, that’s good. It’s like, um, if somebody sneezes around me or I don’t want anything to do with that kid. Because one time we went to, um, Best Buy and the cashier, she sneezed and I said to Brian, I’m going to get sick. I know it. Sure enough, the following day I was down with the flu. So I tried to stay away from sick to people. So that’s good.
Susan: You know, and at first it’s awkward, wearing it, but you know, my health is more important, to me than that. And now when you have a mask on, you are much more aware of those people’s sneezing around you than you were before.
Susan: And I wash my hands, keep my, you know, just do that all the time. Sometimes I’ll take wipes and I’ll wipe down the, the tray table, um, at my seat. Um, but I just, uh, you know, knock on wood, fortunate, I haven’t been getting sick. So, um, and even going to foreign countries and all, I’ve just haven’t had anything other than maybe some minor intestinal, like all travelers get sometimes.
Brian: Oh yeah.
Brian: So let’s dive into your involvement with the foundation. Um, besides running a support group in the Inland Empire, being on the planning committee for the upcoming LA Area Walk.
Susan: I’m actually the Chairperson for the walk.
Susan: You didn’t realize that?
Brian: Wow. We have our boss in the room with us. Now we really need to mind our P’s and Q’s.
Susan: This is why I’m thankful for all your support.
Brian: Um, talk to us about how you got involved. What was your motivating factors for getting as involved as you are. And, um, what is the biggest thing you’ve taken away from what the foundation’s doing for all of us?
Susan: Full disclosure also, I’m on the Board of Directors for the foundation, as well. And so I am very involved. So, I am a little partial to, um, the good work that the foundation does, which it does so much.
Susan: When I was diagnosed, like everybody you’re overwhelmed at first. And you say, what is this disease I can’t even pronounce? And then you start reading about it. And I think the first reaction is you’re very scared because you read all these terrible things. And then every little ache and pain you now think is, uh, oh, I have this lung disease now. And you know, maybe it’s hitting my lungs or it’s just, it’s so hard.
Susan: So, after being diagnosed, I just tried to find out as much as I could about the disease. And I don’t know how I initially found the Sjogren’s Foundation. Online, obviously, it must’ve been. But about nine months after I was diagnosed, they had, um, a national patient conference. Which they hold these every year in April, usually the beginning of April. Which is April, is Sjogren’s awareness month.
Susan: And I went to the National Patient Conference and that year it was in Seattle and I was blown away. The knowledge, what I learned was just amazing. And this room full of hundreds of people. They usually have about 500 attendees at the conferences. Both people with Sjogren’s and their significant others, family members.
Susan: I learned so much. I learned that there was a drug to help with dry mouth. I didn’t know that before then. And I went back and I talked to my doctor and he prescribed it and I’ve been on it since then.
Susan: Um, but I learned so much and but there was another lesson that I took away from that first conference, which was sitting at tables and talking with other Sjogren’s patients, realizing that I wasn’t alone in this, but there was also a cautionary, I remember that everybody at my table had had sinus infections and I thought, oh no, I don’t want to get sinus infections. You know, these are just miserable. And if this is the way my life is going to go, cause remember I was just within the first year of being diagnosed,
Susan: Four years later, I have not had a single sinus infection. So just because you read things doesn’t mean you’re necessarily going to have that problem. Just because other people have that doesn’t mean you’re going to have that problem. So that was a big takeaway from the conference.
Susan: But anyway, the foundation, I just saw the good work that they did. So much information on the website, started dealing little bit with the people who work for the foundation. And Steve Taylor, the CEO and said, well, you know what, I’m looking to, I was at a point in my life where I was at the point where I needed to get involved with some other things and it fit the bill for me.
Susan: The staff, Steve and the staff are incredibly dedicated just over the top dedicated to helping Sjogren’s patients. Helping people with Sjogren’s. And helping to, um, advance the knowledge in the medical community and the community at large. And working towards research. And finding drugs to help. And working with government agencies. I’ve just been blown away by it.
Susan: Which is why I decided that this is what I want to get involved with. And I guess in addition, one of the things that’s really nice is that they understand Sjogren’s patients. Because they know that it’s not like volunteering for something and you’re committing, I’m need to do this Monday, Wednesday, Friday from eight to 12. And what happens if I wake up this day and I feel terrible. They understand that.
Susan: So when you’re doing volunteer work with the foundation, they understand that on your limitations. But they really appreciate absolutely everything that people, people do. It’s just a wonderful organization.
Brian: Yeah, we’ve learned probably more about the foundation in the last two years than we have the first day. But Dr Ryba, whom we’ve talked about before, one of the first things he told Lupe, is there’s a newsletter, it’s called The Moisture Seekers. it’s by the Sjogren’s Foundation, you need to get it, which was awesome. And that day she went and signed up and we got the next issue.
Lupe: I signed up right away. I got um, I get the regular issue and then I also get the quarterly.
Susan: I get that as well.
Lupe: For the quarterly. Do you have to sign up? Do you have to request that separately?
Susan: Doctors receive the Sjogren’s quarterly for free. The Sjogren’s quarterly is more technical, more medical focused. And so doctors can get that for free. So you can sign your doctors up, talk with them first. But you can sign them up and they can, as a push to get them to get some knowledge on that as well.
Susan: Yeah. Don’t just all of a sudden sign them up and have it appearing in their mailbox. Say, hey there’s this publication that I’d like to see if you would are interested getting. But for people who are not in the medical community. Yes, there is a, there’s a subscription on that.
Brian: Yeah. And it’s, it’s really good. There’s some great articles. I’ve always taken at least one thing away from it. Uh, putting the time into to read it. They’re really well done. So,
Susan: You know, along those lines, speaking of talking to your doctor and offering to subscribe them to that publication, I would encourage everybody to have a relationship with their doctor, where they can feel free to discuss information and discuss treatments with their doctor.
Susan: Um, my doctor just last week, my rheumatologist said, I’ve learned from you and that was a real, made me feel good. But he’s open to information that I have and share. If I see an article or something online and I’ll bring it up to him, hey, what about this?
Susan: Or like the clinical practice guidelines that I know Steven Taylor talked about on his podcast. Bringing those to your doctor and saying, hey, what about this treatment? Are you familiar with this? And those are available on the foundation’s website for download. But knowledge is power. If you want to have control of your disease, you need to understand the disease and you need to understand options out there. So I just really encourage people to learn as much as they can.
Lupe: And you’ve been with your doctor for a long time, right?
Susan: I have.
Lupe: You’re so lucky.
Susan: I know. It’s a mental health visit for me when I go because I always feel good when I leave.
Lupe: Yeah. And you build a good relationship with them and you could just talk about anything.
Susan: That’s very true. And you know what, I asked my doctor, one time, cause I thought why do people go into rheumatology? It would seem that it would be such a difficult field. I mean, look at Sjogren’s, there’s such overlap of the symptoms with, with RA and with Lupus and the other diseases and overlap and treatments and we’re all different for with what symptoms we present.
Susan: So, one time, I feel like we have a good enough relationship, I said, can I ask you a question? Why did you go into rheumatology? And his short answer was that he likes the continuity of care. He likes working with people over a longer period of time and developing that relationship with them. Rather than somebody who has a broken foot and they heal, the foot, and then they never see the patient again.
Susan: And I thought that was interesting. I think it tells, uh, the character of the, um, of the doctor that they truly care, which I’m fortunate that my doctor is that way.
Lupe: I’ve never thought about it that way. I don’t have a random question since you know, so much. If you’re diagnosed with Sjogren’s and then you’re diagnosed with another autoimmune like Lupus or something else? Why was Sjogren’s primary and now it’s secondary to the other illness?
Susan: That’s an excellent question. Um, the answer is that, I say we, and I’m trying to think of who the we would be. I know it’s the foundation to some extent but I think it’s broader than that. We’re trying to, now, move away from the terms primary and secondary. Because primary Sjogren’s has been thought of in the past as, okay, I have Sjogren’s and I don’t have RA or Lupus or one of the other rheumatic autoimmune diseases.
Susan: But then they would be diagnosed with RA also. And now why does Sjogren’s suddenly become secondary to that? Why isn’t Sjogren’s primary and RA secondary? If you were going to think of it that way? No, you’re a person who has both RA and Sjogren’s.
Lupe: Like it becomes less important.
Susan: Yeah, exactly. Exactly.
Lupe: You know what a lot of people will ask that. So that’s why I thought I would ask.
Susan: Oh well I’m glad you asked that. Because it really, it diminishes the importance of the Sjogren’s.
Brian: I think so.
Lupe: So because, okay, so I was recently diagnosed with Hashimoto’s. So now do I have secondary Sjogren’s and why is it less important? Because I feel Sjogren’s is maybe more important than Hashimoto’s.
Brian: It definitely affects you more than your thyroid’s.
Susan: With Sjogren’s, of course, they say talk about collecting a basket full of diseases. Right. Um, I do not have Hashimoto’s, but I have an underactive thyroid. What that means is that my underactive thyroid is just not auto-immune. Yours, with Hashimoto’s, is autoimmune.
Susan: Bottom line, the way I look at it is what’s the difference?
Susan: We’re both probably on the same medications. Yours is auto-immune and mine isn’t, but we both have thyroid issues.
Susan: So, this is another way that I personally try to deal with the disease, because after I was first diagnosed, I was very, um, like I say, I think it seems similar to other Sjogren’s patients where, oh my gosh, I have a thing with my lung and then it’s getting lung issue.
Susan: Every little thing that happens, you start, you stress because you wonder if this is a manifestation someplace else. And oh, I remember I would say, oh am I getting Lupus? And uh, at one point I thought I was getting Scleroderma. I mean, and my, rheumatologists, the wonderful man that he is grabbed my hand, the skin on my hand and pulled it and said, I couldn’t do this on your hand if you had scleroderma.
Susan: I said, okay, okay, I’ll put that fear to rest. But I reached a point where it was just an acceptance of what I have and not getting as hung up on the names on it. Do I have Lupus also? Well, maybe some of the characteristics of my disease are characteristics of Lupus also, but I’m not going to worry about whether I’m getting Lupus or not, because they run blood tests on me enough to see if it were Lupus, well you know, it might more likely affect my kidneys. Well, they’re running tests, blood tests on me every couple months anyway. And they can see if there’s any problem with the kidney.
Susan: So I’ve told myself, don’t get hung up on whether you have Lupus or not. Where that becomes important, is if you’re part of clinical trials and they want to know and they’re trying to test for certain diseases.
Susan: That’s my own way of acceptance. Maybe other people do differently. And mine is not necessarily the right way. But that has helped me come to grips with not being as stressed out about what I have and the names of all the diagnoses that I have. It doesn’t mean that I don’t stress out when I get a new symptom. I still do that. I still do that, but I’m less hung up on, um, I have this and this and this and this and this.
Lupe: Right. Uh, sometimes I find myself asking Brian, I wonder if I’m going to develop Lupus in the future because a lot of people with Sjogren’s have it too, but then I think, well, I can’t think like that. You know, I can’t let it consume me like that, so I’ll just take it one day at a time.
Susan: I totally agree. And that to me is what’s, you know, what’s under your control and what’s out of your control, right? If it turns out that you have get a diagnosis of Lupus, well then you’ll deal with it then. Right?
Lupe: Right. I’m just like, you, what can I control right now? I can control what I put into my body and that’s all I can do.
Brian: And how many blankets you use when you’re napping?
Lupe: How many blankets? Yes.
Brian: Before I thank you for being here. I really want to encourage everybody to jump on the group and pay attention to what Susan is doing as she’s on our Facebook page and in the Facebook group. But she is truly an inspiration and motivation that even though with Sjogren’s, she’s out there running, she’s motivated several conversations between Lupe and myself, that we need to do that. We can do that.
Brian: And I think it’s encouraging to let people know with Sjogren’s that don’t think they could attempt say a 10K, that you can attempt it. You don’t have to run it all. Get out there, give it a try and do your best. And that’s all we can do. Any given day is our best. And maybe the second or third 10K run, you can finish, you can finish with more running. The point is to get up and move and give it a shot. And we really thank you for that inspiration and that motivation.
Susan: Well thank you. Thank you. And I guess along those lines, one other thought is, I would want everybody to focus on what you can do, not on what you can’t do. And you may not be able to do the same things. Well, maybe you never did a 10K and this would be new for you. But even in your everyday life, you may not be able to do the same things that you were able to do before.
Susan: But that doesn’t mean you still can’t do all kinds of great things and fun things and things that you want to do. Maybe you’ve had to adapt your life a little bit. Uh, when I travel, I used to go on three-week trips. I can’t go in three-week trips anymore. I have to be no more than two weeks because as it is, I’ll be down for a week when I’m home. But okay, well I can’t do three weeks, but I can still travel. So focus on what you can do and not on what you can’t do.
Lupe: Susan is there anything, final words, anything you want to leave with the listeners?
Susan: I think that the, um, everybody is unique. We’re all unique in our personalities. We’re unique in our views of the world and our values. But we’re also unique as to how Sjogren’s affects us. What may be really bothersome to me may not be a problem for you at all. You may have a problem with, with fatigue and I don’t, which isn’t true.
Susan: But um, but the disease affects everybody differently. Treatments affect people differently. What works for one person doesn’t work for another person. So, as I mentioned with the sinus problems, it doesn’t mean you’re going to get everything that you read about with the disease. But also I think it’s important when you’re in online groups and you’re reading the comments from people and you’re on blogs take it with a grain of salt, some of the things that you read. It may be something that has worked for somebody and it may not work for you.
Susan: There are no magic answers. There’s no magic pills with this disease. You just have to find out what works for you. I will say again that the Sjogren’s Foundation website is a credible source, as far as, they do not have information on their site if they don’t know that there’s some basis in it.
Susan: So, um, take it with a grain of salt. Thank you very much for having me here today. It’s been a real pleasure and I want to thank both of you sincerely for all that you’re doing to help this Sjogren’s community and to help people not feel alone out there. To like there’s a place where they can go to and talk to people who have the disease and you sharing your experiences is very helpful to all of them. I know.
Lupe: Thank you. We appreciate you saying that.
Lupe: Susan, so we will see you next month at the LA Area Walks Sjogren’s on the 19th, and we will also be attending your meeting in November.
Susan: Thank you. It’ll be great to see you there. And anybody else who’s local to the LA or San Diego or wherever, if you want to come and join us for the LA walk, that would be wonderful.
Susan: We’re going to have, um, well, Stephen Taylor, the head of the foundation will be there. But we’re going to have some doctors there, who will be available to answer your questions. We’re going to have music. The walk itself is largely ceremonial, so if you can’t walk that’s fine.
Susan: Um, it’s just going to be a good time and a nice opportunity to meet some of those other Sjogren’s patients. And have your families come along too. One of the purposes of the walk is we’re celebrating our strength and our circle of strength, which is the people in our lives who help us deal with the disease on a day to day basis.
Brian: Most definitely. And we’d love to see you and meet you there. There are links in the show notes below to the walk to Team Living Sjogren’s Strong for the walk. Uh, there’s still time to jump on in and commit to raising some money for the foundation. If you have questions, you can hit Lupe or myself up. Our contact information’s pretty much everywhere and we look forward to meeting you, seeing you, and or being supported by you.
Lupe: That’s a wrap. Until next time, sip constantly and stay hydrated.
Donate to the “Living Sjogren’s Strong” Team for the 2019 LA Area Walk for Sjogren’s.
You can join our Team and/or donate to the Sjogren’s Syndrome Foundation
Sjogren’s Syndrome Foundation – https://www.sjogrens.org/
Find us on the Web at https://sjogrensstrong.com/