Understanding and Managing Lupus

What if a childhood filled with unexplained symptoms could finally find clarity years later? In this emotional and powerful episode, we journey with Jodi as she takes us through the highs and lows of her lupus diagnosis. From the age of four, Jodi's life was a whirlwind of mysterious rashes, fatigue, and pain. It wasn't until she was 13, with the help of the dedicated rheumatology team at SickKids in Toronto, that her family’s relentless quest for answers finally bore fruit. Jodi shares how her parents' fierce advocacy and the support of persistent healthcare professionals made all the difference, turning confusion into understanding and hope.

In an inspiring discussion, we explore the creation of "Fabulupus," a groundbreaking book written by two young adults with lupus. This crucial resource aims to help young people navigate the complexities of living with chronic health conditions. We delve into the practical advice the book offers on relationships, education, and workplace rights. Jodi and I exchange thoughts on the importance of personal stories in guiding others, and we provide tips for aspiring authors looking to make an impact in the chronic illness community. The chapter underscores the power of support groups and connecting with relevant organizations to foster a sense of belonging and shared experience.

Our conversation also highlights strategies for managing lupus day-to-day. Jodi emphasizes the significance of mindfulness, self-care, and building relationships with consistent healthcare providers. From breathing exercises to using practical gadgets like automatic can openers and sit-to-stand desks, we discuss tools that can simplify life with lupus. We wrap up by reflecting on how living with a chronic condition shapes one's perspective, encouraging listeners to embrace their unique journeys with grace and self-compassion. Join us for an episode filled with heartfelt stories, valuable insights, and a celebration of resilience.

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Lupus Diagnosis and Treatment Journey
• 12:51 Youth Lupus Life Guidance Book
• 18:59 Building Relationships, Managing Symptoms, Self-Care
• 25:42 Daily Life With Lupus Tools
• 31:31 Daily Life Questions and Pleurisy Explanation

Transcript

Jen: 0:08

Well, hello, my Spoonie sisters. It's your host, G, jen, and I am so thrilled to have Jodi here with us today. Jodi, how are you?

Jodi: 0:18

Hi, hi, jen, hi everyone.

Jen: 0:21

You know, I would like to tell everyone that you and I are both kind of having a lower day today, and that's okay. We are still going to be on here. We're going to do this.

Jodi: 0:30

Absolutely, absolutely we will. We will just persevere, and then I will go back to resting after.

Jen: 0:36

That sounds like a wonderful plan. I think I might have to do the same. So do you mind sharing a little bit of your diagnosis story with us?

Jodi: 0:44

Yeah, no, not a problem. So I am coming up on 30 years of diagnosis at the end of September, beginning October, depending on how you define timeline, and exact day of diagnosis can be a bit up to interpretation. So I was. It was right around the time that I was turning 13 that I was diagnosed and I had had just like. The story sounds similar probably to a lot of folks that I'd had symptoms since I was four years old. So I had symptoms for eight years and I had even previously been tested for lupus and that had not come back inconclusive, so they hadn't diagnosed me me. And then finally, when I was in hospital when I was 12, and then 13, I was diagnosed at that point in time. So my symptoms prior to that range were just, basically, I was always had a tendency to be sick. I always had kind of these random, rare symptoms of rashes and extreme fatigue and just always prone to kind of being sick. And then finally, what led to the diagnosis was that I had a bunch of things all at once and then finally they were able to kind of piece the puzzle together. So I was having some arthritis at that time and I was having some pleurisy, so I do have some inflammation of the lining of the lung and scar tissue related to that.

Jodi: 2:20

I had rash across my face Initially. Ironically, when the rash presented itself, it was a couple weeks after I had a new face cream, so obviously we didn't jump to a conclusion that it was a rash right away. We thought it was a reaction. Same thing when my hair started falling out. It was around the time that we switched shampoos and other body products, so we thought it was maybe just some sort of reaction. A lot of fatigue. I may be missing some symptoms in there, but those are the primary ones that I recall. And yeah, so just all of a sudden I had had everything once and it was a little easier for them to kind of piece the puzzle together on what had been going on for all those.

Jen: 3:01

So once you got started seeing some doctors, did you feel like you got answers right away, or did it take some time bouncing around to different physicians, specialists and such?

Jodi: 3:12

So that whole time where I was having symptoms I was bouncing around different doctors my parents had brought me to every specialist possible. Right, we did rule out allergies as much as we could. We even went naturopath. We even went to an iridologist someone who reads your eyes to see if that provide any insights. We really they were really trying to find answers because they just knew something was wrong and they weren't willing to accept my pains were growing pains. They really knew that, like the pain I was describing and experiencing really seemed to be something more than just that, just as one example of one symptom. But they really felt the other symptoms were not necessarily as easy to explain away. So they really were trying to dig and try to find an answer.

Jodi: 3:58

And then the rheumatology team at SickKids in Toronto finally, when I was, like I said, 12, 13, was able to run some tests and not only did I have enough symptoms to tick the boxes for diagnosis, but the blood work was indicative of lupus at that time as well, whereas when I had been tested for lupus when I was eight, the blood work did not show anything, even though I had some symptoms. So they couldn't diagnose me. So I had to be thicker, I had to become sicker, have more symptoms for it to actually show up at blood work for them to be able to diagnose me, which is so, so frustrating, and that's kind of how it has to happen.

Jen: 4:39

Absolutely. So once you got the diagnosis, do you feel like you were able to start feeling better? Did they find some treatments that worked for you?

Jodi: 4:49

So it did take a while to find what was going to work for me and my parents. Along with being 12, 13, I was, you know, speaking to the doctor as much as I could, but very much my parents were primary advocates for me and with me.

Jodi: 5:07

I'm fortunate my parents were right there with me. I do know some teens from back at my sick kids days that their parents disowned them upon diagnosis, which is just absolutely horrible to hear of these stories. So I recognize that that made a huge difference for me when I was first started some medication. It did not work and of course the doctors were saying, well, you have to give it so many months for it to work. And my parents were saying, well, that's not good enough, we're not going to watch her suffer for several months while we're waiting for this dosage to optimize. Because I wasn't able to sleep, I wasn't able to talk or breathe or cough or sneeze without excruciating pain because of my lungs. At that time I couldn't tie my own shoes or get dressed because of the arthritis in my hands and other joint issues, and so they really just weren't willing to accept that. So we did try a few things Through.

Jodi: 6:00

My teenage years was definitely a lot more medication hopping than I have had in more recent years. We did land on a pretty standard prednisone Plaquenil combo that seemed to do the trick. We tried cyclophosphamide. That didn't do anything for me. We tried something else that the name is escaping me right now Started with an N, didn't do anything for me or didn't do enough, and then, unfortunately, in my early days we realized that I had low bone density in my lower back. So we had to switch me off of prednisone and do a gradual switch over to methotrexate, which thankfully held me stable for a number of years and we didn't. Thankfully that transition went well, because that was another time. Of course we knew we had to get off prednisone. We didn't want any more bone damage happening. But and we just kind of hedged our bets on methotrexate based on what had not worked in my earlier years, let's try something else that hasn't been tried yet, and thankfully methotrexate worked, or else that could have been a whole other couple of years of you know, rigmarole, try this, try that.

Jen: 7:08

So how did that go? How did the side effects of the methotrexate go for you?

Jodi: 7:13

like Monday to Friday, but other than that it was pretty, pretty okay. I was pretty fortunate in that regard, except for it did leave me with extreme heartburn and indigestion and all of that, all the GERD kind of symptoms, for a number of years and I think I'm finally have that under control now In the last few months. I've been off methotrexate over 12 years and I think I'm finally have that under control now In the last few months. I've been off methotrexate over 12 years now because I had to get off of it when we decided we were going to try for children and it's taken up till now, for finally I'm at a point where I'm not needing to regularly take antacids or some sort of like omeprazole or something else to control symptoms.

Jen: 9:17

Oh, that's got to be nice.

Jodi: 9:19

It really, really is. I can't believe it myself. Some of the things I can eat now without having any reaction to it, or kind of realizing oh shoot, I forgot to take that this morning and I'm feeling it now.

Jen: 9:35

Well, and I think it's important for people that are new to this kind of world to understand that there are some pretty big side effects to some of these medications good, bad and ugly and I know it's going to take time for it to do its job. It's also going to take time for us to get over initial side effects as well.

Jodi: 9:52

Yeah, absolutely the other thing I struggled I have. I am blessed with very small like newborn veins that are really weakly, and so with methotrexate and the regular belly work, I've had some veins collapse on me. So then, so just not that it's a side effect, but it kind of is. So there's just kind of an added little struggle and frustration there, right that already you're having to go more regularly for those checks.

Jen: 10:22

Do they use like a children's? I think they call it the butterfly to take your. Yeah, Does that work better for you?

Jodi: 10:32

Slightly, but it still usually takes six pokes for them to find the right spot. Wow.

Jen: 10:38

Have you ever had to ask for someone new to draw your blood?

Jodi: 10:41

I've had to advocate. Even just a couple months ago someone was like, guaranteed I'll get it, and then they tried a few times and I said you are getting someone else Like I'm not dealing with this, I'm sorry. Oh, you're getting dizzy. Yeah, no, cuffs are getting dizzy Like seriously.

Jen: 10:59

Maybe it's time you try a different body part.

Jodi: 11:02

Or get someone else.

Jen: 11:10

Well, and you know, they have those wonderful machines now where they can like put it up on a screen and they can see as they're trying to do it. Although my mother-in-law also has interesting veins and I've seen them pull that machine out and they are still having a hard time getting her veins and it's like, oh my gosh. Okay, I feel sorry for her, I feel sorry for them. It's not fun.

Jodi: 11:24

No, no, no, certainly. Yes, that's kind of where my kind of medication journey to date has led me.

Jen: 11:31

So can you describe what your current care plan looks like and how you manage your condition today?

Jodi: 11:37

So currently I'm very, very fortunate I managed to. As I say, I stopped methotrexate Well, stopped, gradually reduced. It took us four years to gradually reduce the methotrexate, for me to be off of it, and so I've only been on Plaquenil since then. So I'm very, very fortunate that nothing else has kind of crept up or popped up or whatever in the mean. Certainly there's been some ups and downs where we just double check where things are at and I need to lay low for a little bit. But I really managed just in terms of monitoring, monitoring my stress, managing like my day-to-day activities, and then I do regularly go. I'm very fortunate that my job, I have insurance so I can go for some extra kind of paraprofessional I guess you could call them services in terms of chiropractor, massage, physio, osteopath, all of those which I find are immensely helpful just in terms of managing lingering symptoms and whatnot. So very, very lucky I recognize that I'm very, very lucky I haven't had any other major flares that have required any new medications to be introduced or anything like that.

Jen: 12:49

So I want to bring this up before I forget. But you are an author, so would you mind telling us a little bit about your book?

Jodi: 12:57

Yes, so the book Fabiolupis. So my co-author came up with that little play on words and so the book. Really, at the time I recognized like social media has exploded since then and whatnot. The book has been out for eight and a half years now.

Jodi: 13:14

And it took eight years of writing and publishing and editing and everything. So it was a very long journey and really, at the time that we were going through the whole writing and editing process, it was the only book for youth with lupus, let alone youth with any chronic health condition, and we were writing it from our perspective of the two of us as being young adults with lupus and talking about all the life stuff. There were books out there talking about the medication or the medical things how to advocate for yourself in the medical, you know, with the doctors, and how to be part of your treatment team, and here's what to expect with lupus and your common symptoms and there is no book out there just talking about all the day-to-day life stuff you know and how do you cope with relationships you know, with maybe your parents worrying about you more, and how do you tell a potential partner you have a chronic condition and how it might impact on your life together. What are your options for going through education and having the support you need, what about your rights in the workplace? What are some safe tips for traveling with a chronic condition, and so on and so forth. Right, so all of that kind of other life stuff and we really felt strongly that this was needed. You know, this type of information and sharing, and each chapter has a couple of examples from our own lives of how we navigated certain situations in those topic areas and and really just trying to get that conversation going a little bit more about how your health is.

Jodi: 14:49

Yes, it's important to know how to be a part of your health care team and, yes, obviously it's important to know what could come up throughout your life with when you're diagnosed with certain conditions as my cat joins us, but it really what a lot of people were struggling to find information and to be able to feel comfortable to bring up was how it was actually impacting all the on your day-to-day stuff.

Jodi: 15:11

And even when you sit down in your doctor's office, they ask you how are you doing? You say, well, I'm kind of doing okay. But you should also be able to say, well, I'm doing okay, I'm managing to get to my school, or I'm managing to get to work, but then I'm sleeping the weekend away. Well, is that really doing okay? Like really understanding how to talk about all of those important things and having the support through all of that. Again, going back to what I said earlier, when very, very lucky, I have some great family support right from the beginning. And not everyone has that. Some others have to kind of find that support from other individuals or other avenues.

Jen: 15:52

Yeah, I think that's wonderful and, honestly, I did not realize the book was out for the last eight years. I thought it was a new book.

Jodi: 16:00

Yeah, no, that's quite all right. That's quite all right. It's just there's so many things out there now, right, there's so many things out there now, and, but I think it's the information is just as relevant, right.

Jen: 16:15

It's not, you know, oh absolutely so yeah yeah absolutely so.

Jodi: 16:20

that's really it. We identified an area where there was lack of information. And then how could we, how could we get this, you know, get this out and just normalize some of these things that you struggle with, how your health diagnosis permeates all these decisions and all these day to day things that might come up for you.

Jen: 16:39

So if there's a listener that is interested in doing something similar, or maybe even a different kind of illness, what would you recommend? How would you say that you recommend to start?

Jodi: 16:50

So writing for writing a book. Really we started with kind of like knowing the areas that were lacking on information, because we were already involved in other areas. We were involved, kind of with local support groups. We were involved I'm in Canada, so provincially, but you know provincially, province or state kind of wide and so we we had some of those conversations and we understood from other patients, not just from ourselves, our own experience, as much as that is a valid experience, but having those conversations. So I think really, if you're interested and you're not already involved at different levels, that would really be a point to start to understand what are the needs and what are the questions and the areas that people are wondering about or feeling they need more support about.

Jen: 17:34

So that's a really good point. Are there any resources that you would recommend that you found helpful?

Jodi: 17:39

So for me there's a bit of a broad answer.

Jodi: 17:43

I've been involved right from the beginning so I do find like some of those tangible resources again the province or the state or the national organizations those are always great ways to either get some valid information, some research-based information, but also it's a great way to get connected and then you can get some one-on-one chats going with other patients through support groups or you can even ask to be connected with someone else, and so that was really important to me.

Jodi: 18:15

But also I started my own support group when I was a teenager because I felt I was always the youngest one going to these things, where now it seems to be a little bit different. Sadly it seems to be a wider age range that are diagnosed with things Then diagnosed I was the youngest in any support group room by decades. So I started my own group and really just kind of spread the word locally that I had this going, and so I think part of it is just being open to having that conversation. I think that's part of it. So part of it is involving yourself and part of it is being kind of having a bit of an open heart and being willing to kind of put yourself out there a little bit and have conversation with with us definitely.

Jen: 19:00

Are there any specific health care professionals or clinics that made a significant difference in your journey?

Jodi: 19:06

I have been very fortunate. I have had um. I've only been involved in two centers. So I was involved with SickKids at the get-go. They're excellent. They're internationally known Great, and she doesn't.

Jodi: 19:21

My rheumatologist there was fantastic, Now retired. The primary nurse that was there was also fantastic. She's also now retired, but she's actually the one that put the bug in my ear about mindfulness. So it's because of her that I started doing breathing exercises to help me fall asleep at night, and it's something I continue to this day. So certainly I think that that's a credit to mention and I'm very fortunate. From there I transferred to my current adult rheumatology center and I'm only on rheumatologist number two, Age 18, up until a couple of years ago I had the same one. So even that in itself is a very odd part of a journey. I know a lot of people have had maybe negative experiences or maybe sought second opinions or their specialist moved around more, so they've had to be transitioned to different files and I've had a lot more consistency in my treatment. So I think that has been maybe helpful, but also very nice. I can develop really good working relationships with them.

Jen: 20:27

And that's important. I think it's really important to be able to have a good working relationship with the people that you're seeing, because you want to work together to help treat you the best that is possible.

Jodi: 20:39

Absolutely, absolutely, and I recognize that can take time. So when we you know, when my current clinic transitioned from the previous as he retired to my new provider, you know it takes a couple of years, it takes a few visits and whatnot to develop a new it's a new communication. It's a couple years, it takes a few visits and whatnot to develop a new. It's an, it's a new communication, it's a new relationship. So it takes a little bit to build up that, that trust and that rapport with somebody new, both from my perspective and even from their perspective, to get to know me as a patient. Um, and that's okay. Any of those transitions are hard when you've already built up a good, a good relationship with someone and trusting.

Jen: 21:15

Absolutely. What are some practical tips you can share for managing symptoms or flare-ups?

Jodi: 21:32

Yeah, I am very big on scheduling and stress management. Now I have a great like I nap pretty much every Saturday and Sunday afternoon. On the weekends. My husband and I have like a whole schedule going. But when I was in university I can remember one of my friends seeing my agenda and she's like wait, you scheduled a nap. Wait, you scheduled in your gym time. And I was like, yeah, if I don't schedule in this self-care time, it just gets gobbled up with other things.

Jodi: 21:50

So it's not to say it's super strict.

Jodi: 21:53

There has to be some flexibility in some of this routine and some of these habits, because certainly life happens. But I start out with those good intentions and having things in place for that, but then with some flexibility, because certainly today is a low, low day and I've been on the couch more than I have been upright today. So it's just, it is what it is right. And I think part of it is building that routine, building some self-care time regularly in there for yourself, whatever that might look like for you. And then part of it too is, you know, having some good people in your corner and sometimes that does mean that you lose, which is hard, super, super hard, but sometimes it does mean that you have to move on from certain relationships that are that are not as understanding or accepting of what your needs are and how your needs can fluctuate, Because that's just, that's just the reality. I do a lot of movement every day, I like to get some fresh air every day and I'm big into, like, yeah, the stress management side of things, for sure.

Jodi: 22:56

Sorry, I interrupted you.

Jen: 22:57

No, that's really, that's really great. Those are all important things, and I'm trying to remember what I had a thought it might have not even been that important. I was going to say we need to stay in tune with our body. It's really important to stay in tune with our body because we know what we need, we know when we need rest, we know when we need movement, we know, and so I think it's extremely important that you're pointing out that you are scheduling these things out, and there are times where you might be able to look at your schedule and say not today, not today. My couch needs me today, my body needs the couch today, and that's okay. I'm going to give myself some grace on that and I'm going to do what my body needs.

Jodi: 23:37

Yeah, and I think so. There's a couple of things there. So I think we have to learn to kind of speak gently to ourselves. We talk to ourselves more than we talk to anybody else, and so we have to try to do a better job on how we talk to ourselves and not get too hung up on the on the shoulds. I should be doing this right now, and that can be a bit of a trap for a lot of folks, and it takes admittedly I know it takes a lot of work to move past those shoulds and just to accept that today it is what it is. And I had another thought too. What was I going to say? We were talking about all of that stuff. It'll come back to me. We are quite the pair today.

Jen: 24:20

I mean, I'm proud of us for persevering, but if people could see the two of us today, I think we both have this glazed over. We both would rather be on the couch, but we're going to try to do this and that's okay, because I think it's really important that people see this side of us and hear this side of us, because this is part of who we are too. We're not always cheerful and bubbly and bouncing off the walls, even if we try to sound it and fake it. And yeah, yeah.

Jodi: 24:49

Yeah, the brain fog hits and the thought is out the window and you can't find the right words.

Jen: 24:54

Nope, Nope, and I'll sit there and I'll stare at people's eyes like somehow their eyes are going to bring the thought back into my brain, and I'm telling you, it just never works.

Jodi: 25:03

I don't know why I think it.

Jen: 25:04

Well, I'm sure it'll come back to you and if it does, let me know. Are there any products or tools that you have found particularly useful in your day to day?

Jodi: 25:15

tools that you have found particularly useful in your day-to-day? That's a really interesting question, right? Like I said, I'm really big into this stress management stuff. So I don't know if you call it a tool, but I really do rely heavily on like the mindfulness and the stress management stuff and really trying and that part of it is that self-talk piece trying to find those moments in those days because you can get really bogged down of like, oh I'm just on the couch all day today, but there can still be some good moments in there, right, and I think we need to. And just from the mental health perspective and the gratitude perspective, I really rely a lot on kind of mindfulness and stress management. So call it a tool. Maybe I don't see why not. But in terms of in terms of products per se, don't necessarily, I don't necessarily have any. Yeah, I don't even have like a name brand yoga mat or name brand running shoes, right. Like it's just I use whatever works for, just use whatever works for. Just use whatever works for me at whatever given time.

Jen: 26:17

Yeah, yeah, I mean, I know for me, you know I have things like, I have a special can opener. It's from the kitchen, mama.

Jodi: 26:24

And.

Jen: 26:24

I love the fact that I can just push a button and it opens it for me, and, lo and behold, my entire family likes that, and so you know that would be my example of a gadget that I have that makes my life easier. I also have, if you haven't heard of it, the Jiffy twist Uh, have you seen those? Goes under the cupboard. Yes, I don't know about you, but I I lack strength in my hands, and if I'm the only one home, there's times where I can't even open a bottle by myself. It could be a water bottle or or whatever. I just can't. It's been a problem for at least the last 15 years.

Jodi: 27:02

Yeah, I do have a little device in the kitchen that helps, that it somehow presses down on the top of a can or a bottle just enough that it releases the pressure, so that then it's easier to turn, easier to turn the cup, so that one's handy. My mother, who also has arthritis, shared that one with me and it's definitely a tool I pull out of my drawer quite frequently, partially for me and partially because my kids love being in the kitchen with me.

Jodi: 27:30

But we have a lot of just different types of easy chop type of type of things right. So I don't always think of it as a tool, but certainly it is right Because it definitely is a lot less energy. It's not, it's not having to use a tight grip because the machine's doing the work for you. So there definitely are some things in there in terms of chop device and turn devices in the in the kitchen that are that are very-to-day not obviously kitchen's day-to-day, but at work I have a sit-to-stand desk, but that's standard for everyone. So I don't always think of it as being a tool, but it certainly is very helpful to be able to adjust. It does decrease some of those aches and pains from sitting all the time. But again, I guess I don't always think of it as a tool because it should come standard for us.

Jen: 28:17

Well, and I think you know, we get used to some of the things that we do and we don't we don't think of them as an assistant, assistive device or anything like that, because we're so used to it. It's just part of what we do.

Jodi: 28:28

Well, I think I said that earlier. Right, some of these habits and routines and things that I have been doing for so many years, I get asked what do I do? And it's like is that really a habit, or is it just? Is this normal to do it like that? I have to second guess myself. Yes, this is what works for me. This is how I run my life. Oh, I remember what I was going to say. See, here's my brain fog. I'm jumping topics, but I remember I knew it would come back.

Jen: 28:51

I knew it.

Jodi: 28:52

It is. And I was talking. So we had our area lupus walk last weekend and I was talking to someone else and they were asking well, how did you even cope being diagnosed so young? And I was like I don't know how I would have coped being diagnosed as an adult. Like I was diagnosed so young that I really I got to know my body very well from a young age and certainly there's pros and cons to that.

Jodi: 29:11

But but I know myself very, very well in terms of in terms of what I need and if I need to move or not, and if I need exercise or just stretching or if I need rest and if I need. Is this something that the doctor, that I need to call the doctor to double check this symptom, or is it something else? And I get to know myself. I've gotten to know myself very well, but also I've kind of built my life around it and so you know, have I lost some things or given up some things because of my diagnosis? It's hard to say because I really I grew up with it. I've taken it into account with every decision I've made. So have I given up things? Maybe? Maybe I've had different choices to make or different options to choose from, but it doesn't necessarily always feel like I gave something up just because I just um, it's not take for granted.

Jodi: 30:03

That's, you know, the opposite of what I'm trying to say, but um, but yeah, it's just kind of always in the background of of anything. So, yeah, that's what I was going to say when we were talking earlier.

Jen: 30:17

I think that's great. Hey, you know what you remembered which is better's what I was going to say when we were talking earlier. I think that's great. Hey, you know what you remembered, which is better than what I'm doing right now. So do you have a favorite quote that you live by?

Jodi: 30:24

So there's. So there's, there's a couple, there's one, that's just. I can't remember where I heard it from. Um, I I've quoted it a few times, which I really should know where it comes from, but I can't remember because it's literally going back to, like, my early years, where it's something to the effect of, like, we all have struggles and we all have challenges in life, and this just happens to be mine.

Jodi: 30:47

You just roll with it, right, and there's going to be days that it gets you down more than others, and there's going to be moments in life where you just kind of say, oh, I did everything right. Why is this frustrating me right now, or why is this not going the way that I wanted it to? But that's just, you know, sometimes that's just what it is right Like. We all have our ups and downs in life and for me, it is navigating life with lupus and whatever that may mean week to week, the and whatever that might mean week to week. The other one that I used to always have on my signature was just peace, love and happiness, because to me that's ultimately like we can always, you know, we can be having the worst day for us, but we can always still be polite and kind to others, most definitely.

Jen: 31:32

Okay, so now I have some fun questions for you, and hopefully these are easy, easy, easy.

Jodi: 31:38

So that depends on the time of day Tea with brunch coffee if it's a regular morning.

Jen: 31:45

Okay, okay. Are you a morning person or a night owl?

Jodi: 31:49

I'm a morning person typically.

Jen: 31:52

I'm jealous. I'm so jealous Typically a morning person.

Jodi: 31:56

When I sleep in, I'm like something's not right.

Jen: 32:00

I'm definitely jealous. I could easily stay up until midnight and sleep till 730 or 8, if you let me. I don't know. I don't know why. I don't have a good reason, my body just likes it. Yeah, no, we all do. Let's see here Reading a book or watching a movie.

Jodi: 32:20

I love me some TV, but I'm really working hard on decreasing that. So I've been really working hard on having some good books around me. Do you have a favorite book Right now? Do I have a favorite book overall? I'm odd. I don't reread books, even if I love them. I don't necessarily say I have a favorite. I do have ones that I enjoy Right now. I wouldn't necessarily say I have a favorite. I do have ones that I enjoy Right now. I'm breeding sweetgrass, so all of the indigenous culture and how we can carry some of that into our modern day-to-day lives, so yeah, I don't know.

Jen: 32:46

Okay, I like that. Cooking at home or dining at home, I say both. Can we say both? It's a little bit of both.

Jodi: 32:53

I enjoy cooking. I don't enjoy the rush of figuring out every day what to make for dinner, but I enjoy cooking very much. When I have the time to just savor it, I do enjoy it Beach vacation or mountain retreat. Mountain, See I love both. I feel, like?

Jen: 33:12

my answer to everything is can I have both?

Jodi: 33:14

We just got back from a week of camping in the middle of the woods where we didn't even have, like my phone was on SOS mode, like there was no connection whatsoever. And yes, there was beaches, but you're in the middle of the woods with mountains around you.

Jen: 33:27

So, yeah, mountains. Did you get to see any animals?

Jodi: 33:30

Not as many as usual. It was very odd.

Jen: 33:33

Hmm.

Jodi: 33:41

I think I always see at least deer, usually anyway, yeah, we don't know if it's because it's really abnormally heat, humid this past week and in general that's been our summer, so we don't know if it's just, the animals are all hiding away, keeping cool.

Jen: 33:53

Do you have any smoke going on over in your part? No, no, we don't. Okay, that's good.

Jodi: 33:59

Thankfully, last year we did this year?

Jen: 34:02

Yeah, we don't this year. We just got back from the other side of Washington State where holy moly, and I think that's part of why I'm feeling so off today is because of all the smoke.

Jen: 34:13

It really did a number on my sinuses and so, yeah, I don't miss that. I'm kind of happy to be back here, absolutely Okay. So I do have one last question I want to ask you before we shut down for the day. So earlier in the conversation you brought up pleurisy, and could you explain what that is to people that are not familiar?

Jodi: 34:36

So pleurisy is inflammation of the lining of the lung. So it's not the lung itself that has an infection, but there's a lining around your lung that is, there's a liner and then there's your lung and then there's like the in-between part. If it gets inflamed, then that's called pleurisy. It's basically like an infection of the lining of the lung, and so you can imagine it's yeah, so it just basically means it's red and angry and when you breathe it is very painful, very painful, like in tears, just coughing and talking or taking a deep breath.

Jen: 35:16

Yeah, it is quite painful. It happened to my husband and we ended up taking him to the ER because we thought he was having a heart attack. Yeah, so, as soon as you said that, I was like oh no, you poor, oh my goodness, can I just hug you. Yeah, so do you deal? Do you still deal with that?

Jodi: 35:30

So that was so I don't deal with the pleurisy itself but I very closely monitor in terms of how much of a deep breath can I take before I feel anything where there's some scar tissue on my lungs, because there's scar tissue left from the parts that were really badly damaged from the pleurisy. Normally, day to day I don't notice it so much. Doctors will notice it when they're doing like the check the lungs and listening. They'll be like, oh, this one moves less than this one does. Oh yeah, that's the spot. Um, so for me it's kind of it's a little bit of like a symptom that I that I monitor right uh, I'm much more susceptible to any cold or virus going to the lungs because of it Absolutely.

Jodi: 36:22

I have multiple puffers on hand kind of all the time. So it doesn't affect me necessarily day to day, but sometimes if it's niggling a little bit, I'll notice it more when I'm exercising or whatnot. But then that's also where some of my mindfulness meditation exercises that get into some breath work come in handy, that I can notice it's tip, it's notice something off maybe earlier. So again it goes back to like getting know yourself piece, like we were talking absolutely. Um, so day-to-day it doesn't affect me. Doctors monitor it closely and then I'm just more prone to anything lung related. So COVID was like a whole thing. I had to like not leave my house for a year and a half till things calmed down a bit.

Jen: 37:07

So Okay, well, I think we covered a lot, but I still feel like I have to bring you back sometime and we're going to cover more. And maybe we'll do it on a day where we're both a little more bubbly.

Jodi: 37:21

We can dive into other things or dive into something I mentioned that you want more on. Yeah, whatever.

Jen: 37:27

Yes, yeah. So I think this is my call to action to the listeners. If there is something else you want to know or something you want to know more about, please let us know, because we will definitely cover that, and I have to thank you for joining us today and please go lay on your couch, enjoy relaxing. I'm probably going to do the same, yes.

Jodi: 37:49

Yes, absolutely, we will all just listen to what we need today. It's all good.

Jen: 37:53

Because there's always a tomorrow. Hopefully I said always, but hopefully. All right listeners, until next time. Thank you for joining us. And don't forget your spoon.