EPISODE 35: BUILDING SPOONIE FRIENDSHIPS

Guest: Jasmine Szantyr

Lauren: Welcome Jasmine.

Jasmine: Thank you for having me.

L: It's so nice to be like, great to be sitting with you. We were just talking about how um, we, it doesn't feel like it's the first time I'm talking to you.

J: Not at all.

L: And we met on social media at the very beginning, like maybe four episodes into the podcast.

J: My blog was new, too.

L: Yes. Yeah, because your blog started right around the same time. So can you start by giving us a summary of your health journey?

J: in 2016,  uh….Around January I was bit by a tick but I didn't know so I did have the rash but I didn't know. I didn't know what that meant, which is one of the reasons why I started my blog, but we'll get into that later. So at the time I had the rash, I have fatigue and I had, I didn't have flu like symptoms like a lot of people do. It was more so like a common cold. And at the time I was a visual merchandiser at Forever 21. So I thought that it was just a crazy hours. I was working, I was making me feel, you know, messing with my immune system and stuff, so then few months later I got a new job and I started working at H&M and they sent me to New York. They sent me to Poughkeepsie to train for two months and that's when my symptoms really kicked in and I was just, I was so confused, like I've been doing the same job for 4 years. Why at a new company am I not be able to do my job anymore? I didn't understand that it wasn't the job that there was something bigger going on. So I think that was in May to July of 2016 and I went, I did go to the emergency room once during that time I was having a lot of fatigue and a lot of migraines, so I want to make sure that I didn't have like a brain tumor. I was just thinking the worst. I didn't have any idea what was going on. I came back from that training in Poughkeepsie back to Connecticut in July. In August I went, this is still 2016, in August I went to a primary care and I got the only thing that she found on my blood work was positive ANA, which can mean anything. It can mean anything from cancer to arthritis to Lupus. It can really mean anything. So she told me that I just needed to see a specialist. I need to see a rheumatologist. So I went to three rheumatologists. They didn't find anything. One told me I needed to lose weight. One told me that...just prescribed something for nerve pain. She didn't even really tell me what was going on and the last told me that I needed a sleep study. She thought that I just wasn't sleeping enough, then I went to two primary care doctors. The first one told me that he thought that I had a Lyme co-infection, but there was no blood work to prove it, that he just thought that. So he gave me antibiotic and then I went to another one who tested me for Epstein–Barr. He thought it could be that, so my numbers were crazy. So positive is above twenty one I want to say, and my numbers are in the two hundreds.

L: Wow.

J: So he, he didn't think anything of it. He's just like, oh yeah, your barr is positive. Why don't you go on some ADHD meds then you won't be so tired all the time. So I did my own research obviously after that. I'm like, why are my Epstein–Barr number in the two hundreds when positive is over 21? And that's how I realized that I most likely had lyme. That's a huge indicator of lyme so then I went to a lyme specialist and that's when I was finally diagnosed. So it took seven doctors, two or three emergency room visits and a little over two years to get a diagnosis.  

L: Wow. And in your story you're talking about how your first question to yourself was “What's wrong with my ability to work? Like why am I not able to do my job?” And that's something that I think so many people kind of relate to is the sense that like what's wrong with me?

J: Yeah.

L: What was that like for you when you, when you were in that phase?

J: It was really, really rough because first of all, well. I absolutely love my job. I love what I did and I hadn't been doing it at another company. I started, I had been working there for four years, but I have been a visual merchandiser for about two, so I had already been doing it for two years, so I'm, I was like, I'm going to a new company where I should be able to thrive better or you know, it was a pay increase. I was really excited. It was the same job I was. There was more confusion than anything. Honestly. I just, I expected to go to this new company and love it and right there and it was the opposite of that.

L: Mmmm. Man. And it's sort of like one of the things that can happen is it's like we feel like our jobs are at stake because even if you really love your job or if you're not able to do it the way that you know you, you've used to, it can be very scary.

J: Yeah.

L: So of course now we're fast forwarding to this moment in time, but I'm curious how it has panned out actually just staying with the threat of your job, like what's, what's happened for you as you've gotten treatment?

J: Yeah. So I couldn't stay at that job, so I stayed for maybe another four or five, six months. I'm not really sure. Maybe like five more months and I just couldn't do it anymore. Um, I was having, I was in pain every day. I was having a really hard time. Um, some of the tasks that should have taken me two days would take me four or five days and obviously my job for that and they didn't understand what was going on. I didn't understand what was going on. So I ended up getting a new job. Luckily I have a desk job now so I don't have to do so much physical labor. Um, but I miss my old career a lot.

L: Yeah. I bet. Especially because it's such a creative expressive job.

J: Yeah.

L: Yeah. So how was the process of finding this new position and like what was the decision making like?

J: Yeah. So I, at first when I left my original job, the job as a visual merchandiser, I stayed in retail. I thought that may be if I were a manager or something somewhere else and my job wasn’t so physical, I thought that the job itself that was causing the pain, so I would have to build displays, I would be using power tools. Mannequins are really heavy. I thought that was what was having me in pain all the time. So I thought if I went to another job being on my feet all the time would be okay if I didn't have to do heavy lifting or anything like that and I was wrong. So I stayed at that job for a few months and then, um, I ended up just at a university in my city. So that's where I work now.

L: Yeah. And I just keep going back to that, that question of when we're not diagnosed yet, it can be, um, we, we come up with all these reasons that we're feeling the symptoms. Like, oh, it must be that these mannequins are heavy.

J: Right.

L: Yeah. So, okay. Other than the job thing, there's so much more of your story when you talked about the seven doctors and so many visits and visits to the ER and you having to kind of analyze your test results and I know that that's sort of a common thing for people who have lyme.

J: Yeah.

L: And so you, you decided to start a blog.

J: Yeah.

L: And I'm curious how all of this came together, where you went from, “I don't know what's going on to me.” to this whirlwind of medical experience to “I'm ready to create a blog.” How did that journey happen?

J: Yeah. So I think I was fed up and what actually happened is I came across the spoonie community so I don't know how honestly I was just doing so much trying to figure out what was wrong with me. I ended up finding an article about the the woman who created the original spoonie blog. I can't remember her name right now, but it just goes into detail about what a spoonie is and how you can use it to describe what's going on to your family and your friends and your job and from that, from that I realized that I could do something like that too. I can tell my story, and hopefully help people first of all know that they aren't alone. Second, realize that they need to be an advocate for themselves. That they want answers a lot of time and just kind of raise awareness overall and when I started my blog actually wasn't diagnosed yet.

L: Wow.

J: So I just, yeah, I got a diagnosis of about two to three months later, but I just knew that there had to be more people out there going through what I was going through. I could share my story with them. I can share my story with others and let people know that this happens far too often.

L: Yes, and it is so comforting. Like I, I know that the online chronic illness community is part of what helps people to understand what's going on for ourselves with symptoms, with the emotions that come up with the feeling like we're alone. So what you're doing is creating another space online for people who can relate.

J: Yeah.

L: How has it been for you to host the blog?

J: It's not easy. I still work full time, so finding the time a lot of times is hard, especially with living with chronic fatigue. I'm trying to push myself and then as far as writing the blog...uhm, that's near impossible for a lot of time.

L: Mmmm.

J: Between fatigue and brain fog I have such a hard time with reading and writing for long periods of time, so it's been really rough, but it's also been extremely rewarding, especially with instagram and the accessibility that people have to information that way. I've gotten quite a few messages from people saying that they just were diagnosed with lyme, do I have any advice for them? I've gotten a lot of messages saying that people have similar stories that I think that's the average is six months to two years or a year around there for people to get diagnosed with lyme.

L: Yeah.

J: So yeah, just talking to people who have been through something similar and being able to even lend an ear has been really rewarding to me.

L: And actually I just realized you. Can you talk about the name of your blog and the focus?

J: Yeah, so it's DrugFreeSpoonie.com. Again, I mostly put my energy into Instagram just because my brain doesn't allow you to write all the time and I just talk about how I am treating lyme and living with as little prescription drugs and toxins as possible and it was actually kind of an accident. I didn't plan to be drug free, but with it taking me two years to get diagnosed, I had to. Nobody can prescribe these prescriptions for things for something that wasn't diagnosed, so I just started doing things to treat my symptoms and that all just carried on through my lung diagnosis and treatment.

L: Wow. It's so cool that you did that and I remember when we first...yeah, we first crossed paths on instagram and just I have, I just want to appreciate you for all the ways that you've supported the podcast and just for being part of this community because it's been really nice to get to know you from, you know, our social media accounts and it's such a testament to how social media can bring people together who otherwise we, you and I never would've met. We're on opposite coasts.

J: Exactly, yeah. What's crazy about it is that all of my friends that I've lived in California. So I’m like, maybe I need to move to California.

L:  Ooh. This is a message.

*Laughter*

J: Yeah, I absolutely love the podcast. I've tried not to tell people this because people look at me like I'm crazy, but honestly this is the only podcast I listen to..the first podcast I've ever listened to, but I think I was just like, wow, this is really, really cool.

L: Wow.

J: Just opened me up to a new world. Yeah.

L: All right. Well then we got lucky that you picked “This Is Not What I Ordered” because that's a big deal if it's the only one that you listened to.

*Laughter*

J: Yeah.

L: Um, so, so now I'm curious that you've, it's been several years and as you look back to when you first started to get your symptoms, if you could go back in time and speak with yourself from, from back then, what would you say to her? What would you want her to know?

J: I wish that I would have been more of an advocate for myself. I wish that when I first got the rash I would have gone to the doctor. I would tell myself just stop listening to everyone else and listen to my body.

L: Mmmm.

J: Because that...everyone was telling me it's just, they were confirming my doubt. So I didn't think that it was a big deal. I'm like, oh, maybe it's just a spider bite or maybe it's just I have a cold and everyone confirmed that. So I didn't go to the doctor right away. I wish that I could go back in time and just say, you know something's wrong with your body. You need to go get it checked out.

L: Yeah. Ooh, that's a powerful thing that it sort of like, there's this certainty in what, in what the you have now is saying like, nope, stop listening to all of the sort, sorta like the noise of everybody else that can clutter our consciousness, uh, because there's so many messages coming in from the outside and of course we have to discern what's helpful, what's not. But what you're saying is turn inward to what you know deep down you need to get addressed. Trust that.

J: Yeah. And that's something I will carry on. I believe through my entire journey with lyme disease that when I know something's changing, I know something's going on. I need to make sure that I get it checked out.

L: Yeah. And I think so many of us don't because it's not fun to go to the doctor or because it's expensive to go to the doctor.

J: Oh yeah. Yeah. That's something that I'm also not scared to talk about on my blog. I know a lot of people don't disclose how much they spent, but with lyme specifically is really important because so much is not covered by insurance.

L: Ugh.

J: A lot of lyme specialists don't even take insurance. There's a lot of information out there in regards to why they don't, so I don't want to get too into that because it's hard to know what's true or what's not, but what's mostly said is that they run the risk of being shut down because it's not recognized by the CDC and insurance companies that Lyme is such an issue. So doctors do not want to diagnose people with lyme disease because they can't treat it properly with your insurance.

L: Mmm. It's so discouraging.

J: Yeah. So my lyme diagnosis, realistically I kind of cut corners and I didn't do all the blood work that I should have, but it would have probably cost me about $1,500 if I did.

L: Yeah. How's it been? What's the response been as you share about that piece of the journey? The financial stuff.

J: Honestly, no one really says anything. I think they just say, “Oh yeah, me too.” It's just. No, I think a lot of people with lyme disease just know that's normal.

L: Yeah. They're like, “We're not surprised.” Yeah.

J: Yeah.

L: So one of the topics that you are passionate about is creating a community of people who can be there for you. Can you talk a little bit about that?

J: Yes. So the lyme test isn’t that accurate. I was tested plenty of times over those two years and they never came back positive. So no one believed me. No one thought that anything was wrong with me. They thought that I was just tired. I was overworking myself. If I didn't have my husband, I don't know that I would have a diagnosis right now because he was a person that listened to me and told me, “If you believe something's wrong with you, then something probably wrong with you. Go to the doctor.”

L: Mmmm.

J: There was a lot of people in my life who weren't like that. They didn't believe me at all and it was really hard to be going through everything that I was going through and how people just kind of brushed it off. So I would say that my husband and my two best friends really are the reason why I have a diagnosis today and a lot of people don't even have that. I've, I've read some stories online, I've talked to a few people whose family doesn't believe in lyme at all or doesn't believe them at all. Um, and that's one of those where the community comes in. So even if you do have people in your family or in your life, your friends, your coworkers who believed you and who listen to you, a different understanding comes from someone who has gone through what you go. So I can talk to my husband all day of all my symptoms. I can try to describe what brain fog feels like. I can try to explain how tired I am, but he's not going to have the same understanding that you will or that someone else will. So I think that the spoonie community is really having a bigger impact than any of us even realize.

L: Mmmm.

J: Because just having that support makes a huge difference in someone's feelings for multiple reasons. Um, one being that stress is a huge factor and almost every autoimmune condition, almost every health condition. We all know that stress may cause a flare up. I'm causing their symptoms to worsen. So even if you just have someone to talk to and talk it out and tell you it gets better or tell you that it's not going to get better, but this is how you can deal with it. Um, I just think that's really, really important.

L: Mmmm. That's so true. And yeah, that's a great distinction between, first of all, needing the people in your life to believe you and to surround yourself with people who are going to believe you. That's really important. And then the other piece is even with those amazing people in our lives who are supportive to us, some of them don't understand because they don't live it.

J: Right.

L: And you're saying we really need to be conscious of not just having people in our lives who love and care about us, but also intentionally reaching out to connect with people who get it from the inside out because they're living it too.

J: Yeah.

L: I think there are probably a lot of people out there who don't have that who like I'll even say for myself, it's been a slower process of building that community for myself than the community of people that I already had in my life who care about me because it takes time to meet people.

J: Yeah.

L: And even know to be intentional. I think sometimes people don't think that they necessarily need that, which is okay, but now that I'm a few years into it, I realize. I think I could have used that a lot sooner.

J: Yeah. I would say I started my blog in like January or February, earlier this year and just recently have I started considering people friends. That might sound pretty bad, but I just now realized like these people actually mean what they're saying and they actually understand me and these people are really my friend. Because when you first started your blog, you get compliments. You get people saying like, Hey, I went through that and you're like, okay, everyone in this community is really nice, but it does take a while to make those connections and realize that these are people that you can really go to if you need something and these are people that really understand and you can talk to them and they'll be there for you. So…

L: Yeah, and I think also just the whole concept of learning about essentially strangers online.

J: Yeah.

L: Which is essentially what we're doing and getting to know people from far away who we may never meet in person.

J: Mmhmm.

L: Is there a part of you that ever questioned if it would make sense to make friends with people online given that you might not ever meet them?

J: Yes, and I think that that was part of my hesitation in the beginning and I also think it has something to do with me as a person in my life. So I'm an introvert, extreme introvert. I've had social anxiety for mostly my entire life. I went to a high school that has 75 people in my graduating class, so I'm not used to meeting new people. I'm not used to making friends, so that alone is something that I struggled with and then on top of that for it to be a different type of connection because it's all digital and people can control what they share and what they give others access to and I go both ways, so it's definitely harder to build a relationship with someone who you might feel like you don't really know, but I've realized that it doesn't matter. I don't need to know someone's entire life story. I just need to know that they understand me and I understand them and that they're there when I need to talk and those people I consider a friend.

L: That's so beautiful and I'm glad that we're talking about this because I think we've never really explicitly talked about on the podcasts, like making friends with people in the chronic illness community online is a different kind of endeavor than most of the rest of our social interactions in our lives and like what you're talking about is it can actually be really a wonderful way to connect when social anxiety is present or when you're not used to meeting a bunch of people and also when physically we just don't necessarily have as much energy to get out and be at social events in person. There are a lot of real benefits to making these connections online.

J: Yeah.

L: And what I'm hearing from you too and then I want to make explicit is these connections are real, so…

J: Mmhmm.

L: And I want to validate that it is real. I think sometimes people question if it's like a fake connection because it's online, there's no doubt in my mind.

J: Mmhmm.

L: Not only is it real, but I think it's actually impacting and in some cases saving lives because we're being connected when we could have been really isolated.

J: I one hundred percent agree with that. That's one of the reasons why I think it's so important. Even going back to what I said about how my husband pushed me to go get a diagnosis, I feel like if you are researching your symptoms and you come across someone going through all these same symptoms and you can reach out to that person and then you know, find out what their story was and what they went through back and push you to get a diagnosis as well. So I think that just overall really impactful,

L: Right. Yeah. So on top of just making that heart connection, it's also like, okay, I have peers who are also getting tested who are setting a really positive example for me. Or in your case you talk about, I know sometimes you post pictures of products that you're trying and things that you're testing out and you're reporting to the community. Here's how it's working or not working. For me it's like an a, it's an idea exchange.

J:  That's something that I found really useful too, which is a reason why I continue to do it. I have so many friends who have tried things that I want to try so I can just ask them. You know, one of my big things is I'm terrified of side effects. I'm very, very sensitive, so I guess I freak out when I have to try a new medicine or a new herb or whatever it may be so I can just message one of my friends and say, Hey, have you tried turmeric. Did you feel weird afterwards? And it definitely is one of the things that eases my anxiety to be able to communicate with people who are doing the same thing that I'm doing and and exchange ideas like you said.

L: Yeah, that's so cool. It's so great. I'm really glad that we're talking about this and you know what I just realized we've never talked on this is not what I ordered about what the term spoonie means.

J: Yeah.

L: Do you want to. Do you want to give your definition?

J: I can try.

*Laughter*

J: I actually went to an event this weekend where I went as a blogger and so many people were like, well, what's spoonie? I know it's kind of hard to understand as simple as a concept as it is. So the original creator of the term “Spoonie”, the way that she described it was. Imagine that you're having a party and you need enough utensils for everyone at the harsh. You need enough spoons for everyone to eat. Their ice cream at the end of the party would like to make sure that you don't run out of spoons, so you would equate to energy. So you have this entire day, you have to do laundry, you have to go to work, you have to take a shower, you need a certain amount of spoons for each of those things. Sometimes I have 10 spoons in a day. Sometimes I have five spoons in a day. If I wake up with five spoons and my shower takes me five spoons, I'm going to have a rough day, so it's an easy way. She created that. She runs out of energy. Basically was the easy way for me to communicate mostly only with my husband and my best friend, but I'll just say, you know, I can't go to the grocery store tonight, I don't have enough spoons, and that's how it works. It just is more so a way of communication, but I think that based off of that one log it was, it became a way for people to, to connect to each other. So I may have lyme, you may have a different diagnosis, but we're both spoonies, we both go through chronic fatigue, we both have chronic pain and we know how it feels to be burnt out our way through the day. And I think that's where the community….not necessarily, that's where it came from because I think the community still would have existed without the term spoonie, but I think it's a way to simplify everything and let people connect to you. Um, whether it be people in the community or outside of it.

L: Yeah. I remember when I first learned the term, it was such a relief.

J: Yes, exactly.

L: Just to like know that there's. Okay, wait, so it's, I'm having this experience and I'm not the only one having it and oh my gosh, there are so many people who get it. Even if, like you just said, they don't have the same diagnosis as me.

J: Yeah.

L: There are so many people who do understand and I remember when I first learned about it, I wound up finding some, I don't know if it was wikipedia or some article somewhere that was talking about, I guess the founder was at the diner or some restaurant with her friends.

J: Yes. Right. That's the same thing I read.

L:I love that her friend, like her friend didn't have chronic illness, but her friend was really curious like, what is it like for you? And I was like, that's a good friend.

J: Yeah.

L: I'm glad that she was asking and then what was cool is that the person who established the theory was so thoughtful and coming up with, okay, what's the best way for me to describe units of energy? I'm going to give my friend a handful of spoons and say this is how many spoons of energy you have for a day and I'm going to take half away. And that's what it feels like is you just have your spoons to work with. I never before having MS, I never considered taking a shower to be like a strenuous thing.

J: Oh my goodness, that's showering is one of the hardest things and I feel like that's something that always, not that only spoonies say, but something that spoonies understand. One of the hardest things to do on a day to day.

L: And just going back to that original part of the conversation about being at a job and feeling like I can't do my job versus my body can't do my job. We can take it so personally and I know that even though I have this orientation around spoons and around fatigue, I still can be a little bit hard on myself if I'm not paying attention. When I you, when it's time to take a shower and I do it and then I have to rest afterwards. There's this pattern of thought that shows up that's old from like a long time ago that just says, Lauren, you're being lazy or you're, you're being unmotivated.

J: Yeah, I can completely relate to that. We moved a couple of months ago and I still feel pressure everyday to come home….obviously, we still have boxes, like I haven’t unpacked our entire house. Me and my husband both work everyday, so I feel the pressure and had to plan in my planner already. Okay, today I'll unpack two more boxes and then I do feel bad about myself if I don't do it, but I can't do it. That’s something else that we all struggle with, like we know that that we're spoonies, we know that this exists. We know that we have these days where we run out of energy and we still….I really did some mourning our old life, which I feel like is something that's talked about but not talked about. It's like three years ago I would've been able to do this and then I have to put myself in check like it's not three years ago.

L: Mmmm.

J: I can't do this today. So that's something that's been pretty hard to.

L: Can you talk a little bit more about that idea of mourning the old lives that we had?

J: So I….There were a lot of changes in my life. I was like my health, my lung disease progressed. One being that a lot of my friends worked with me at my old job, so yes, I, I got a new job. I got a student job since then, but the combination of getting a new job and not having the energy to carry relationships like I used to, I basically lost all of my friends. Which was hard for me because it wasn’t my fault and I had to realize that that it wasn't my fault that I couldn't keep up with them anymore, for lack of a better way to say it, in that they just had to move on and live their lives and they didn't understand what I was going through and not it was going to be okay. So my career, my friends, and then a lot of hobbies as well. I used to love photography. I have six cameras collecting dust. Fashion, which was part of my career as a visual merchandiser. I got to dress up how I want it every day and now I have my dress code is business casual, but I really want to wear leggings every day. Just try to be comfortable. So there…. there's a lot that changes and that we absolutely do not have control over and you have to learn to let it go and it's not easy, really not easy.

L: Mmmm.

J: I think that one of the most important parts about it is self love. You just Kinda have to figure out, okay, I'm not able to be as fashionable as I used to, but I still have that in me. So I can go online and I can look at assets and put them together for fun or I can still figure out how I can dress up leggings and make it fun. You just kinda have to mourn the parts of your life that are gone, but embrace the parts that are still there and figure out how to incorporate them into your new life.

L: Alright, so now I have tears.

*Laughter*

L: You just said that so beautifully. It's such a loving way to talk about it, and to think about it.

J: That's something I'm working on trying to be more.

L: Because it's hard because part of grieving is being willing to essentially fall apart for a few for a few moments, for a few hours, for a few days. Sometimes it's weeks or months and by allowing ourselves to experience those emotions, the emotions have permission to move through us and then there's more. There's always more life, there’s always more life through the grieving, the grieving. I think sometimes we get scared it's going to end our aliveness or sense of being fulfilled and whole, but I actually think it's the grieving that opens up the secret door into a whole other part of ourselves that we never had access to before.

J: Yeah, I, I agree with that. You just kinda have to let it go and move on with their new life. There's things that I can appreciate now that I didn't appreciate before, so I've...first, I have to allow myself to mourn my old life, to allow myself to breathe, but then I'm going to move on and I'm going to appreciate what I have now.

L: And that comes from, for me at least, that ability to move on. There's like two ways that I've noticed I've tried to move on. One is by skipping grief and one is by moving through the grief.

*Laughing*

J: Mmhmm.

L: And the moving on that has felt the best for me has come as a result of like an organic process of dealing with real feelings and then coming out the other side and feeling almost. I want to say refreshed, like spiritually refreshed? Right?

J: Yes. I can relate to that. On some days I'm just like, it's easy to get overwhelmed. I think what we can all relate to with chronic fatigue because there are so many things that you want to do that your body won't allow you to do and you come home and there's a sink full of dishes and there's a pile of laundry was just like our am I going to do this? And then like just cry. Just cry for an hour or however long I need to cry and then afterwards I feel fine.

L: It's so cool that you let yourself cry. I mean, I do have to say I think that's something to be celebrated. I'm a therapist. I'm a little biased. I think it's really good to feel our emotions, but to me that is a huge act of self care and self love is, for example, when I get home and I see all that's in front of me and I feel so discouraged and so miss my old life and the ability to to just dance around the kitchen and clean up all the dishes and then go do something afterwards. It's just not going to happen today and that breaks my heart and that's when my heart most needs me to hold it by crying or by just feeling.

J: Yeah.

L: And I also want to say that what you brought up about grieving the old life or grieving really anything to do with health challenges, that it's something that can happen over and over and over again. Like it's not like there's just, okay, I grieved for a month, now I'm better. It's like I grieved for a month because I needed to. Now I'm not grieving and then I might have five minutes where I need to grieve or I might have another day.

J: Right. Yeah. There's always going to be something. So maybe on a beautiful day I really want to take my camera out of my hand, won't let me hold my camera so I have to grieve that and then I have to go look up my old photography and smile because at some point I was meant to do that or some point I was able to do that. There….There is always, there's always something and I think that it comes with practice. I think a lot of people are going to listen to this and be like, what the heck are they talking about? Like I cry a lot of the time and I don't feel better afterwards.

*Laughter*

J: But I think that it took me almost three years to be able to do that and it is something that that is helping me daily.

L: Yeah, that's a really good point. There's something you said when you said “My hands don't let me hold the camera that I so want to be using on this beautiful day.” It made me think of one of favorite tools for self care and kindness and just being loving towards myself is to imagine that the part of me that's feeling upset or hurt is like a little kid and how would I treat a little kid who really wanted to use her toy, her camera or her, whatever the toy is, let's say it's a craft project that she wants to do and if she was heartbroken about it, I wouldn't say get over it. Right?

J: Yeah.

L: I would say, come here. Let's feel these feelings like let me give you a hug. What do you need? Do you want to just cry about it for a little bit? Because it's true. You can't play with it right now and it really hurts and then like you just said, can we look at the other pictures together that you took before? Can we allow ourselves to experience joy in addition to this pain?

J: That's actually a really awesome way to put it, that I might use going forward, especially when it comes to relationships loss. I only have two friends right now and I'm not sad about it. I love my best friends. I'm an only child so they were like sisters to me, but sometimes they're both working and I want to go out to eat and I can't because I don’t any other friends, so I think that that's a really awesome tool to use in a situation like that. Like you know, all your friends moved away, but can we think about some memories can meet, plan a time for you to get together with the friend that you still do have. That's really cool.

L: Mmmm. Yeah, like it's a different tone that we take with ourselves or with whoever it is. I mean for some people it's like our inner child. Some people you can think of a beloved pet, like a dog that you feel so close to that you would like. If your dog was hurt, how would you care for your dog? Like so much love or a dear friend or a family member, but whoever it is, just imagining the part of us that can give love to that, that person or that being and using that same part of us to nurture ourselves because it's all within us. We have the capacity to do it. It's just about, like you said, applying it at the right moment.

J: I think it’s just, overall, not being hard on ourselves like this can relate to so much more than mourning our old lives or, or trying to be positive than our current lives. Which reminds me as something that you sat in a previous episode when you were talking. I was trying not to cry. You were talking about when they found another lesion and you had, that you thought to yourself, what did you do to cause that or what could you have done differently? I have that all the time. When I was bit by a tick I had the rash and less than 50 percent of people actually have it. So those 50 percent of people that never have it, they didn't have the choice of going to get it checked out. I did. And that's something that I always beat myself up about. Like what if I had just went to the doctor? What if I had realized that at that time that something was wrong, but there was nothing I can do about it.

L: Mmmm.

J: I can’t go back in time to take myself to the doctor. Um, so I've done that has also taught me to not be so hard on myself because something I've been saying since before I got sick, something I started staying in high school is everything happens for a reason. I don't want to be going through this. I don't yet understand why I'm going through this, but I am and I will find out eventually why. There's a reason for this. So there's no point in beating myself up about it or being upset about it because obviously as we just said, we have the moments where we are upset and we, we have to deal with those emotions and move on. But telling myself that everything happens for a reason. There's another powerful tool to get me through those moments.

L: Yes, and I'm actually wondering that same question I asked you earlier about going back in time to when you first started getting symptoms. Now I'm wondering if I can ask that same question but a little bit differently about this scenario.

J: Mmhmm.

L: If the part of you that is so loving and caring towards yourself could speak to the part of you that is afraid that she did something wrong by not getting the rash checked out, what would she say to that part of you?

J: Oh man, that's a tough one. I think I….I would probably just say everything happens for a reason. I mean, I have gone back and forth with trying to place the blame. I tried to blame my job saying that if they had to allowed me the time off, I would have went to the doctor. I try to blame my family saying, you know, if they would have told me to go to the doctor. I would've gone to the doctor. I was an adult. I was still in my early twenties at that time, you know, I could have gone to the doctor so, but it goes back to me holding the responsibility, but realistically there is no responsibility. That wasn't anyone's fault besides the ticks. I can’t go find the tick and I can't do anything to the tick.

*Laughter*

J: So it’s kind of just like, to me it's kinda just like a lost cause. I can't keep beating myself up over something that I can, I have no control over.

L: Yeah. Yeah. Because it's true. We don't have control over the past. And also I love that concept of saying to yourself, it's nobody's fault and it... It doesn't even really help to try. So it's almost like saying you're off the hook. It's okay. You're off the hook forever. You don't have to even spend another moment worrying that you did something wrong.

J: Yeah, that's exactly it. Just kind of talk myself through it and I literally go through the same stuff every time. Was it the job’s fault? Was it my family's fault? Was it my fault? Nope. Okay. I'm fine.

L: Yeah. I also love the idea of like finding the tick and like having a moment of reckoning, like I'm going to punish you for this.

*Laughter*

J: RIght. This is your fault.

L: Right. Which is so wild because the tick, it's like, is this carrier of this disease? Like it's just such a wild way to receive a health challenge is from this other being.

J: Yeah. Really. And I think a lot of people with Lyme feel the same way I do. They see a tick and they're like, I hate you. You're gross, like, get away from me.

L: Right.

J: Which, I mean, it's not the fault either. Honestly.

L: It’s true.

*Laughter*

J: They're just trying to survive.

L: Oh my God, I love it. You have compassion for the tick right now. You're like, you know what it was just trying to live. What does it mean to you to live a fulfilling life? And has your definition of fulfillment changed over the course of your health journey?

J: Oh yes. I think that it's evolving every single day. Uhm….So I graduated college in May of 2015. I got bit in January of 2016. So I was used to working full time and being a full time student, you know having hobbies and having a whole bunch of friends and that was my definition of fulfilling at the time. Somehow it still is. So for example, right now I'm trying to learn like three different trades. Um, I'm trying to run a blog. I'm trying to help my husband run our production company. I'm working full time so it's evolving. I don't know why even have a definition right now.I do have best with definition right now...to me it's where the living each day to the fullest because I don't know how much I'm going to wake up. I will know. So I'm going to be able to study what I need to study after working all day. I just need to do what I can and then do what I enjoy. So I would say my definition is do what I can and do what I enjoy. If that means going to work nine to five and coming home and being on Netflix for the rest of the night, that's what it means that day..and the next day I can go to work, come home and read or do some of my homework. Then that's what it means the next day.

L: I love that. Do what you can and do what you enjoy. I like how simple it is so that it's possible to do and it, it kind of gives you permission to not have to focus on everything else.

J: Yes.

L: I love that. And also the idea of living each day. I think anything that takes things one day at a time is a great start because that is so much more doable than.

J: Oh yeah, yep.

L: More than, more than a day. Like I think that's just, it helps me to stay more in the present moment when I'm just focused on this day.

J: Yeah, definitely.

L: So do you have any funny stories from your health journey that you can share?

J: Uhm...like, I have funny stories but they're not really funny, I just feel like they’re funny to me. Like the other day I was...one of the things that we didn't talk about, but one of the things that I think is important, is...that's cool is feminine health.

L: Yeah.

J: Um, so one of the things that happens to a lot of women with lyme is that you get really, really heavy menstrual or painful menstrual cycles, which is something that I've had in my whole life.

L: Mmmm.

J: I didn't realize the difference. So my coworkers always record me doing health related things at work that they think it's hilarious. The other day I was hiding like between the cubicle and the wall, like rubbing cream on myself and there's like a video of that. One time I was taking alka-seltzer cold, which is like a lyme disease hack. I don't know how it works or why it works, but if you are having a herxheimer reaction, which is when bacteria is dying off. Alka-seltzer will help. So when I take it out, like freak out and I make like a really gross face and my coworkers love recording that freaking out.

L: Oh gosh. I just realized I saw that video. You were serious. It wasn't like you were pretending not to like it you seriously didn't like it...

J: Like it’s so gross to me, it's just like chalky and even now I don’t like thinking about it.

*Laughter*

J: So those are usually some pretty fun times.

L: I love that they, that they like, they're kind of your documentarians where they're like, oh, she's doing another health thing, we're going to take a video.

J: They’re like, “Oh she’s going to spray that stuff under her tongue again. Let's see. Let's see how she reacts to this time.”

L: I also have to say like hiding between the cubicles to rub cream on yourself. Have you heard it? Oh my gosh. Is it like your belly? Just….

J: Yeah, so it looks even more awkward than you can imagine because you can see me from the head up and then you see my arm outside of the cubicle just going like this.

L: Oh my gosh.

*Laughter*

J: Basically just my hand rubbing it on my lower stomach.

L: And you needed to do that because that's exactly where the pain is.

J: Yeah, yeah.

L: Oh my gosh. I love it. It's so funny. You're like, I don't have any funny stories. And you're like, wait, I have eight funny stories.

J: Yeah!

L: That's really sweet. It's also like a really loving connection to have with people at work.

J: Yeah, I know. I can go to that one corner of the room where everyone knows me and they all are like women and they know what's going on and I kind of hide over there to take my medicine.

L: Awww.

J: Oh yeah.

L: They're your people. I love that.

J: Yeah.

L: What do you have now that you might not have had without your health challenges?

J: Wow. Self love. It's a big one. It's not that I didn't love myself before, it's just that I, they know that I need to so much effort into doing so and I don't, I don't have a doubt. I don't 100 percent love everything about myself. I'm not one of those people that promotes self love and you know, say that it's easy to do...but I had two different parts of myself because my life is different now. Another one is the relationships that I have with my friends and my husband. I don't doubt that me and my husband would be together right now, but we probably wouldn't be married yet.

L: Yes.

J: Because I was so sick we couldn't put money into a huge wedding or I couldn't put the energy into planning one, so we kind of just went for it and I'm so happy that we did. I think that  it’s just made us appreciate everything more and that's one thing that lyme disease did for me.

L: That is so cool. I love the idea that, I mean, to me there's something around the essence of why we have marriage, or at least in your case, the essence of why you married him was because you wanted to be together and sometimes it is the big planning and the huge event, which as fun and exciting as it can be can take us away from doing what our heart wants to do now, which is….

J: Right, exactly.

L: You wanted to be married. That's so cool.

J: If we didn't get married then our life would be much different now and I'm so happy that we did it.

L: Awww that is so cool. That's awesome. Finish the sentence. This is not what I ordered….

J: But I'm grateful for the lessons that I've learned.

L: Mmmm. Thank you so much for joining me for this episode.

J: Thank you for having me. It’s been a long time coming.

L: It has and it's just been really fun to sit with you and I'm excited to to put this episode together and also to stay in touch and maybe we'll talk to you again on another episode in the future.

J: Yes, I want to do that.

L: Thanks Jasmine.