Chair of the Board of Directors and keynote speaker for the Sjogren’s Syndrome Foundation, Janet Church joins us this week on “Sjogren’s Strong”
Her journey with Sjogren’s is unbelievable and you will not want to miss it!
Brian: So today we have Janet Church with us. And Janet’s worked as a Marketing Executive for over 20 years in the tech space. She also currently chairs the Board of Directors for the national Sjogren’s Foundation and has been blogging since early 2016 on Sjogren’s Syndrome. Janet, welcome to the show.
Janet: I’m excited to take part in Sjogren’s Strong.
Brian: We appreciate you coming on.
Lupe: Tell us a little bit about yourself. You also have Sjogren’s?
Janet: Yes, I do. I’ve Sjogren’s for, oh my gosh, um, I think quite, quite a bit longer than I’ve been diagnosed, which is a common story for most of us. But I’ve been diagnosed for about 14 years now, 13 or 14 years.
Lupe: Wow. What were some of your symptoms?
Janet: So it’s very interesting, uh, that whatever brought people to seek the diagnosis of Sjogren’s, is kind their group of symptoms, have continued to be kind of my hot spot.
Janet: So my symptoms certainly were dryness, I just didn’t recognize it as such. Um, early on, my very early symptoms were consecutive, and ongoing sinus infections, that I could not cure. And I had two surgeries to try to remedy the problem and the doctor just couldn’t figure out why I was continuing with the sinus infection. At that time, uh, I did not go to another doctor, a rheumatologist or immunologist, to try to see why that was. And I just kept on working.
Janet: And it wasn’t until the disease progressed quite aggressively and to a lot of dryness, both eye and mouth, that I started to seek help, still did not get help. And then finally I had what’s called a cataclysmic event where my body just started shutting down and I was hospitalized and had what I now know was aseptic encephalitis and meningitis, which is not a common thing with Sjogren’s, but it is something that can occur. So I finally got a diagnosis.
Lupe: At the hospital?
Janet: Actually not at the hospital. Um, I actually had every single doctor trying, except to rheumatologists, trying to figure out what was wrong with me. And I was in the hospital for three weeks and had a long road to try to recover after getting out of the hospital. Even took me a while to be able to walk again. Um, that took another couple of weeks. And I continued to seek, um, a diagnosis and finally saw a Mayo Clinic Diagnostician who read my, at that point, very, very sick file and said, the only doctor you have not seen as a rheumatologist, I think you might have an autoimmune disease. And I was then diagnosed within three days of, of tests coming back from my rheumatologist.
Lupe: It’s amazing that uh, all these groups of doctors, they didn’t know what was wrong.
Janet: It was pretty amazing because I had, uh, an infectious disease doctor. I had, um, a neurologist. They were considering doing brain surgery.
Lupe: Oh my God.
Janet: Which, you know, I’m glad they didn’t. And every sort of doctor was around the, uh, the bedside without a rheumatologist. Hopefully, more people get diagnosed without that particular journey.
Janet: That’s want in the future, faster diagnosis.
Lupe: A lot of the people that we, that we’ve talked to, they say like, they don’t have any symptoms until maybe they have an operation or a big infection. And that’s when the disease kind of wakes up, for lack of a better word.
Brian: Like it’s almost a trigger.
Lupe: Yeah, yeah, that’s the word. Yeah. It’s almost a trigger.
Janet: You know, it can be. And I had always considered, once diagnosed and when I took a look at my history and my journey and my major stress events. I really thought it was major stresses that kick the Sjogren’s gene on. But now I’m really not sure because when I talked to a pediatric rheumatologist and talk about some of the things that are, um, common symptoms for children, I actually had a couple of common symptoms that no one ever really thought much about. But I didn’t get seriously ill until, uh, I just piled more and more life on and more and more stress on and my body just went a little nuts.
Lupe: And you thought it was just life?
Janet: I thought, well, at the time where I first started, uh, around those sinus infections and starting to get really tired, I had been the technology industry for quite some time. I had been CEO of a marketing technology company and um, I had a lot of stress because of the industry. What they say about the industry, it’s very true, about the stress level. And I just really thought I was burned out and done.
Janet: And then when I sold my company and moved on from that company, I got worse. And even right before, um, my major hospital event, there were a few weeks I was sleeping 15, 17 hours a day, knowing something was really not right with that. You know, that’s just not being tired. So it has been a very interesting journey and I think my major stress event, which I did have some significant stress events, really added to how hard the disease decided to come on.
Brian: So operating as an executive for as long as you had, you wrote, which this doesn’t surprise me, “You face challenges head-on, gathering information and performing to the best of your ability”. What do you think is the main contributing factor to have that mentality? To see a challenge come up with a solution and continue to move forward?
Janet: You mean how can I apply that being used to that type of executive function? How do I apply that to living with my disease?
Brian: More so do you think having operated as an executive, did that make you look at Sjogren’s as just a challenge, like you would something in a board room, to continue to move on or has your mindset changed with Sjogren’s, to be able to push forward like you do?
Janet: You know, I have really awesome osculated on that very topic and uh, have come to peace in some regards with my Sjogren’s because my journey is, you know, once diagnosed, I felt great relief. I mean there was a period in the hospital, you know, when I was in the hospital, we were actually fighting for my life.
Janet: You know, at that point, it’s like what the heck is going on to cause me to be this ill? Including, there’s about a week there that I don’t remember anything. And having any thoughts about that, whatsoever. But in coming back out and finally getting a diagnosis, I was super excited for a diagnosis, which is not uncommon. Because my instant reaction is, aha, I know what I have, now I can fix it. Which is using my executive experience in the past and business experience of seeing a problem and coming up with some ways to solve it.
Janet: So, of course, I’m sure there’s some people that are going to be listening that might get a chuckle out of this because that doesn’t actually work. Um, you can’t, you can’t muscle yourself out of, out of this. And it took me some time to go through the grieving process. Because I also had the first, uh, except that some basic parts of my personality, I’m seeing a problem trying to solve it, you know, wasn’t going to work.
Janet: So something that was so fundamental to my personality just wasn’t the tool that was going to provide much of a solution for me. So I really had to figure out what is a way that I can come to terms with this disease. I think I even wrote it, there is an old, um, uh, Moisture Seekers from the foundation, where I write about this and talk about, that I essentially had to, instead of fight this thing, you know, come up with how I’m going to solve this, how I’m going to eradicate this little beast out of me.
Janet: Um, I actually turned the exact opposite, to say, how am I going to love this? How am I going to calm this reactive thing inside of me? How am I going to calm it down? Because I had that thought that, ah, I’m fighting something so I’m exacerbating it. Maybe I need the opposite approach. There’s been different points in time throughout the 15 years of facing my own personality to see when some of my natural skillset work and when they don’t and then trying to determine what might help me more.
Brian: Are you into mindfulness and meditation.
Brian: If you would describe how mindfulness and meditation and anything else you might do along those lines helps you with your illness.
Janet: Absolutely. Not, it is really interesting because I talked to a lot of patients and a lot of rheumatologists and people in general around autoimmune disease. And it is always wonderful to hear other people’s journey but also to know where you are in your own journey when you share someone else’s story.
Janet: And so I came to mindfulness, you know, later and meditation a little bit later, in my journey cause I was still going through the grief process. So I think, you know, when people listen to other stories, it is a good practice to consider where am I in my own journey here. And what do I need to move forward?
Janet: But meditation is something that I could encourage everyone to try to practice because what it fundamentally does, um, there’s so much research on the power of meditation that everyone can do Google. But the meditation practice completely helped me to calm and center myself, uh, my mind and my body. And allow me to be in a place to respond to what I hear or what I feel or to what I experienced instead of react to it.
Janet: So, um, I find this very, very useful, uh, when my disease is activating in a way that is causing me to feel reactive. Another common ones for me is anxiety and spending a little bit on anxiety of what, what’s in the future? Am I going to be able to do that? Can I achieve some things that I want to achieve? Am I going to be cut down, uh, short from that because I’m going to get sicker? And you know, the what if, what if, what if. And that does not serve me now.
Janet: So the practice of meditation help to reduce that anxiety, which also can help reduce my experiences of tipping into any depression, which I have done. So the meditation itself, and I couple that with yoga. Uh, and when I’m really busy and I get off of my actual practice of yoga and meditation, I feel the anxiety can rise back up.
Janet: I feel the reactive space of being reactionary to what someone might say or what I might hear in the news, which can make one reactive, you know, for where we are right now. Uh, and the medication does help me make sure that I am considering something, considering other perspectives, responding with thoughts. And calm, um, just not letting my brain go too far awry.
Lupe: How many times a week do you yoga and meditate? And how hard is it to quiet the mind?
Janet: You know, what’s great about meditation? Many people believe, um, if they’re not in a current meditation practice that, oh, I’m not good at meditation cause I can’t quiet my mind. That’s the actual point of meditation. It is a practice. It is something one has to work on and get better at. Just like if you’re doing pushups, you know, you might be able to do two at the start. But if you keep working on that, you build actual muscle and being able to train your mind to not go into kind of the circular pattern of listening to your own thoughts. It takes practice.
Janet: So when I am practicing every day, and just 15 minutes a day will do it, for me. Uh, I’m doing great. Right now, I’m not actually doing that. So you ebb and flow into this when you get busy and then you realize, oh, I’m feeling kind of agitated inside. There’s too much going on.
Janet: And it’s like, ah, I haven’t really been keeping up on my practice. Um, and yoga, I do yoga every morning when I get up, simply cause I’m so stiff and my joints hurt so much, it helps relieve that. And then I often sit down and meditate right afterward. Because yoga is about bringing together the spirit, mind and the body. That’s what yoga actually is. And I do a real slow yoga. I’m a big believer in yoga to quiet the body.
Brian: I’ve said it before on the show that I wish I could meditate. And I’ve tried for a while, you know, I’ve been disciplined enough to, you know, give it that good old try for days upon days. And I just can’t get past the fact that when I close my eyes and I start some deep breathing, it’s okay the dishes still need to be done. The dogs did, the dogs have treats? Did I do their flea medications? What? And I just, you know, after five minutes of that I’m like, okay, now my mind is tired and I need to take a nap.
Lupe: So you don’t get anything done.
Janet: To help people who are challenged, you know, there are guided meditation. So where you’re listening to someone else’s voice, um, or where you’re listening to music that is even um, uh, composed on a particular beat that might be, uh, at a certain, um, heartbeat rate to help calm your body. Cause you will get into sync with, with um, a beat. So perhaps you haven’t found the tools that could help you best
Lupe: Janet, when, because you blog, right?
Janet: Yes. Not as much as I’d like to. Um, but I do blog. Yeah.
Lupe: Why did you start blogging and about Sjogren’s? How did that come about?
Janet: Well, uh, it really came about because I gave a keynote speech at a national patient conference for the Sjogren’s Foundation at the National Patient Conference, a number of years ago, and everybody asked me to make the speech available to them.
Janet: And the very first posts you see are that speech. And I developed the speech and continue blogging because I’ve had to work so hard on my own journey to figure out how I’m going to deal with this. To figure out how to vantage the emotional impact and the physical. The emotional impact is more difficult for me than the physical impact.
Janet: Um, I do have physical aspects of the disease, but it’s the emotional impact that causes me greater difficulty. So the time that I’ve been trying to figure it out for myself and trying to be thoughtful and introspective about that. And talk to so many people that I’ve talked to, therapists, rheumatologists, different doctors, different patients to try to figure it out.
Janet: I just heard more and more of that I wasn’t particularly unique. So I thought, well, if I spent time kind of thinking through this stuff, maybe it’ll help from other people, shortcut some time on their own journey. Because if I can help somebody with just one new spot, one new perspective that helps them, that would be wonderful.
Janet: So that’s why I blog. I also blog to share, uh, is one of more recent ones. You know, I spend a lot of care and trying to be, um, as good to myself as I can. To try to control things to the best of my ability. And yet Sjogren’s will still rear its ugly head and knocked me down. And a couple months ago wrote a blog about how I’ve been so careful, so perfect, perfect patient to be prepared for a social event that I couldn’t do.
Janet: And it wasn’t a large social event. It wasn’t like a gala event, it was a family. One of my best friends, family birthday party. And my friend’s daughter is a goddaughter and she was visiting. And I was going to see her and celebrate a birthday and I simply couldn’t even drive there.
Janet: And I got very angry at Sjogren’s. And so I blogged about it, kind of showing that, wow, even those of you who read my blog and think that after all these years, you know, I don’t get angry at it. In fact, I do. We are all human in our journey. And, um, none of us, we can all try to do better with living with our disease. But none of us want this disease. So it sometimes kind of does take us by surprise and, um, and uh, we have every right to be angry or sad about that.
Lupe: Yeah. I mean, I’ve had Sjogren’s for 10 years and I think I have it under control and you’re right, out of nowhere nit comes on and it drops me on my butt, you know.
Lupe: Yeah, yeah.
Janet: How do you deal with that?
Lupe: You know, I sleep a lot. I mean, I do get angry, uh, depression and anxiety. I think we all go through that. So you kind of just have to ride it out, you know because we all go it.
Brian: You know, on I guess somewhat of that topic. In your blog, you have titles like Relapse to Reinvention, Life with an Autoimmune Disease, Self-Sabotage, and Sjogren’s Symptoms Cause and Effect, and When Major Grief and Autoimmune Disease Collide and they all kind of have an underlying theme of grief. And can you talk to us about that? The grief involved with a chronic illness and how you’ve dealt with the grieving process?
Janet: Yeah. Um, there is a grieving process. Uh, it is a very unusual state to have part of your life, and in my case, one of my favorite parts of my life killed. But you’re still, you’re still here and you’re like, oh, okay, now who am I without that now? Know who am I, you know, to move forward into life.
Janet: So I think there is a lot of grief with it. I know all of us have grief around what has been lost. I tend to create titles and comm blogs. You can actually look at my blog and you can kind of see where Sjogren’s knocked me off my feet. Um, and it made me angry or it may be sad or I hit depression. There’s a blog on that. It’s blogging for me, writing for me is also an outlet.
Janet: And just putting my thoughts down is an outlet. And an outlet for processing my own grief. For those people who journal, um, they’re just not making it necessarily public, but I hope their journaling is an outlet for their grief.
Janet: Um, but loss does keep rearing its head. And with Sjogren’s, there are times when the disease also advances. And so there are new phases of loss. And hopefully, you can do really well on medication, do well on your, on your stress control. Um, I have found that stress factors are a major part of how bad my disease will show up. But whenever something happens, you may find yourself going into grief and that is just kind of part of the beat. The actual grief process of being newly diagnosed is very different than the grief process of living a while with it.
Janet: And I’d love to make that point so people understand that they’re kind of two different things. I believe them to be two different things. They’re still grieving, but one is a new process and one is remembering a process. And the longer you live with the disease, the faster you might get through the phase of anger. Or if something else is a challenge.
Janet: Um, that one article on When Grief and Sjogren’s Collide, that article was actually a different grief scenario. It was the grief of my father dying. So I was grieving being at the bedside of my father. And what happened was my Sjogren’s luckily behaved during the death, his death process. And during the preparation of his funeral. But literally, the day of the funeral and luckily I could push through it. But my Sjogren’s really activated and it was because of the month stressors.
Janet: So, life still happens with Sjogren’s. Those stressors certainly affect your disease and might even cause you to go into not only a disease activation, a flare-up, but other emotional challenges. Because other stressors activated the disease. That’s something every person needs to figure out how to help themselves through that.
New Speaker: Yeah. You know, in my life, my father passed with Lymphoma when I was 17 and that was probably the first time, obviously watching a loved one deteriorate, um, as he did. But having really cycled through the grieving process. And then obviously I’ve had other family members who have passed, you know, to date.
Brian: And with Lupe and being along on this journey with her, I don’t know, I don’t look at me going through a grieving process. It’s just, plans change. And I’m guessing that’s because there’s a disconnect because I’m not the one, you know, affected-living. I can’t say affected or living with because I am, but I’m not the one dealing with the physical symptoms.
Brian: So, you know, I get dressed, I hop a shower, I come out and we’re ready to go and she’s sleeping. Okay, plans change and it’s nothing I get angry or upset about. It’s just, I understand what’s happening to her physically and plans change.
Brian: I mean, and that’s, that’s probably the biggest impact other than, you know, not having much meat in the house. Those are probably the two biggest impacts on my life with her. Now obviously it saddens me to watch her, especially when she’s in flare. It saddens me to watch her do that and do everything that I’m capable of doing to ease the pain and make her comfortable and make sure she’s resting comfortably. And so she can get through that so we can get back to, you know, a normal life.
Brian: So, when I was reading about some of the the grief you are writing about it kind of caused me to stop and think about, you know, it and you know, grief that I’ve experienced in my life before. And how somebody with the chronic illness is possibly going through, you know, these five stages of grief continually.
Lupe: Brian has always been very understanding, but since we’ve been doing the podcast and we do, we search for, you know, whatever topic we want to talk about, he’s learned a lot. And um, he’s very understanding.
Janet: I can tell by listening to the podcast, it’s pretty wonderful if they hear the partnership that you guys have in your marriage. And you do sound understanding Brian and Lupe, you do sound like you’re not giving up on life, which some patients get stuck in a place of grief, stuck in too much anger, stuck in resignation, that they just can’t move forward. And both of you seem to be really wonderful examples for the rest of us.
Lupe: Yeah, I mean, we’re usually pretty happy? I am, I’m happy. I’m always in a good mood. Just when I’m in flare. Brian’s looking at me like, really? You should’ve seen his face. No, but you know, I should have taken a picture.
Brian: She’s always in a good mood.
Lupe: Okay. Okay. Okay.
Janet: You’re a naturally happy person, that’s wonderful.
Lupe: For the most part I’m always in a good mood. Um, but you know, when my Sjogren’s is acting up, I just get really tired and irritated and it just happens. It just happens out of nowhere. It’s just one of those things you just don’t know.
Janet: Well, it’s one of those things and it is good for people to remember that when you’re in flare, your body is completely inflamed. That includes your brain and your vagus nerve. Your body is completely inflamed. And inflammation has an impact on your brain, on the exhaustion, you feel on any feelings of depression.
Janet: Cause I know it’s not uncommon that when you feel a flare, you can feel depression. That’s a lot of inflammation going on. Uh, especially if you, uh, outside the flare that the depression feeling or the sadness or what, however someone titles that goes away if you, if you feel okay. And for those people who, when the flare reduces and that doesn’t feel okay, you know, I really hope they getting help with that so they can enjoy more of life and just get that support because there’s so many different avenues for support.
Lupe: A lot of people do get stuck, but a lot of people, I don’t think they have a support system. You know, their family, whoever is really close to them, they just don’t understand. You’re just lazy. Basically what it is. Right? That’s what people think.
Janet: Yeah. Whenever I hear that my heart just hurt, that just hurts for them. And people are in those situations, um, and everybody has to choose how to handle that situation for themselves. But um, yeah, I hope people can find ways to change that dynamic. You know, with whatever tools are available to them.
Janet: Cause everybody deserves support.
Lupe: That’s right. That’s right.
Brian: I think this is a good segue to our last question, you wrote way back then in that 2015 may issue of Moisture Seekers, No Is a Complete Sentence and It’s Okay.
Brian: And that is something…
Janet: I wish I followed my own advice much more than I do. But yes, No Is a Complete Sentence and It Is Okay.
Lupe: You don’t have to explain why no, it’s just no. Basically that’s what it is.
Janet: It is harder for people with children. Yeah, you can’t say no to much. There are things around that statement that people need to adjust for themselves. Um, and I understand that. But yes, with friends or with people asking additional things outside of whatever your plan is for your life to be, uh, to be healthy, healthy in every sense of the word. Anything outside of that basic plan that is your priority, no is a great complete sentence.
Brian: You know, it’s, it’s funny because sometimes we’ll plan on going on a hike and I watched the weather, you know, pretty intensely leading up to the day we’re going to hike and we start hydrating days before and weather’s just turning and it’s not going to be good for us. It’s going to be too hot, too sunny. I can’t find a suitable area to hike in where we’re not going to deal with the heat. And I’ll tell her, no, we shouldn’t hike. And she gets so upset.
Lupe: Well, I spent three days packing for my hike.
Brian: So she needs to learn that no is a complete sentence and it’s okay.
Lupe: Even if it’s coming from your support system.
Janet: Well that can be true. I have another saying, which I always intend to write a blog post on. I don’t know if you all saw the US News and World Report article last year that, my journey was featured in that. But the other concept that I try to keep in mind is how can I live life on the edge of the cliff. And the cliff being, if I push one more step, I’m going to fall off and have a flare or rewound.
Janet: Um, because there’s also a tendency to say no so much because you’re afraid that you’re going to flare, that you leave some unlived life on the table. And for some people that have sadness, for me, that would make me sad. So I’m often testing a boundary, with caution. Now it’s like, Ooh, do I have to say no to that? Could I push a little more and really have fun? And that’s if the thing, if the, uh, situation sounds like fun, sounds like it adds to my life.
Janet: And sometimes I do push through that and have no adverse effects all or just need a little extra nap the next day or if it’s a weekend. So I also like people to know that sometimes you got a test that no boundary to make sure you’re not leaving from life and unlived. Know that everything, all the dreams we want, there’s still possible we might have to get to them a little differently or it might take a little longer than before we got ill. But our dreams are still our dreams
Lupe: And we still have to follow our dreams, chase them.
Brian: We’ve made changes to where, you know, we no longer hike on a Sunday because Monday is a workday. So if we’re going to do something physical, we choose Saturday. That way we have the Sunday to recover if need be. You know, and that’s that probably goes along that same line. Yes, we’re going to push ourselves, but we’re also going to leave that buffer in case, you know, we do push a little too hard. At least we have a day to recoup.
Janet: Perfect example. Yeah, absolutely.
Lupe: I remember one time I pushed myself too hard and uh, I was in bed for like a week. Well, I went for, uh, I think, uh, it was a hike and bike ride. Like Saturday I went on a hike. Sunday I went on a bike ride and it just.
Brian: She was done.
Lupe: Yeah. But it was fun. Can’t take that away from me.
Janet: And hopefully while you’re recouping that week, you were thinking about that fun.
Janet: Exactly. And I took pictures, you know, and I was looking at my pictures. So, yeah.
Brian: So, Janet, we really appreciate your time and uh, you coming on Sjogren Strong and we want to give you the opportunity if you could say one thing to somebody newly diagnosed, what would that be?
Janet: Whatever you’re feeling and wherever you’re at it is okay. And it will be okay. There are many people who understand you, who are available to help. Reach out to the Sjogren’s Foundation and know that you will find your way to your new normal and continue being exactly who you are.
Lupe: Yeah. Thank you, Janet, those are great words.
Janet: I hope that for everyone.
Brian: Most definitely. Well, thanks again, Janet. We do appreciate it.
Janet: Thank you. You guys are awesome. What a fun couple to talk with. And I sure hope that not only Sjogren’s patients listen to your podcast, but partners and family members to hear, um, some great examples of, uh, the journey and what a great supportive relationship around Sjogren’s can be. So thank you.
Lupe: It makes a world difference. Thank you.
Janet’s Blog – https://www.sjogrenslife.com/
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